Sunday, November 30, 2008

First Bottle

First Bottle Part 1

First Bottle Part 2
Click on this if you want to see more

Lily again continues to amaze us and do very well with everything she is supposed to struggle with. It is obvious that God's Hand has been in her life from day one, because we alone do not deserve as much grace, mercy and blessings that have been poured over her from Day One. Lily, and the rest of the family, just had an incredible Thanksgiving Holiday. Holley got to dress her little girl for the first time, we were able to visit Lily together for the first time in about a month (thanks Vickie and Jamie). Lily is also starting to hold her own temperature with less bed warmth, she was successful with her first two bottle feedings, and even did well with her first attempt at video of that. Ha Ha!

Lily now weighs in at a whopping 3 lb 8.5 oz (1600 grams) and is packing on about an ounce per day! They will continue to give Lily at least one bottle/mother feeding per day. The rest will be fed through her tube, but progress is sweet. It is so important that she continue to put on pounds so her body can be physically stronger. Since being in Level Two NICU, it seems that her O2 requirements have been higher than in Level Three and it concerns us. The nurses do work with her, but they are very busy feeding and caring for other babies. In Level Two, the nurse to baby ratio is less which keeps them very occupied. We are thankful and have been very pleased for the most part with the care she has been given at the hospital. Her two primary nurses from Level Three still come by and check on her. We owe a ton of thanks to Stephanie and Jackie for the care and compassion they had for our sweet Lily. Also a shout out to our new primary in Level Two, Chelsie! We can already tell that you will take great care of our daughter as well.

Now, what's next...we still are taking it day by day and Lily has some things she needs to improve on before we can talk about coming home. Please pray for these things specifically so she will meet these milestones quickly. First, that she continues to put on weight and fully maintain her own body temperature. Second, that her respiratory functions improve to the point that her daily dose of caffeine is no longer necessary. Third, that she continues to feed more and more from the bottle or Mom. Finally, please pray that she is able to wean off of O2 requirements quickly!

We are thankful for each and every one of you who keep up with our lives and our daughter's life through this blog. Her life has strengthened our Faith, and we pray that she has the same effect on you.

Friday, November 28, 2008

Getting dressed up...

Thomas and his friend Cole hanging out...Thanks to Cole's mommy and daddy, Greg and I were able to spend Thanksgiving with Lily together and she cooked us an incredible Thanksgiving dinner!! Thanks Vickie and Jamie! Y'all are the best!

Sweet Eyes!!!


First outfit...thanks Vickie for the sweet outfit

Mommy cradling Lily for the first time

Daddy cradling Lily for the first time!


Playing dress up for the first time!! Forgive me for not having a matching hat...What was I thinking?

Wow, what an amazing Thanksgiving we have had. We have so much to be thankful for this year. This year Thanksgiving had new meaning for us. We realized more than ever how truly blessed we are. We have two beautiful children that have brought us more joy and happiness than we ever could have asked for. We have wonderful family who have dropped everything over the past several months to fly out here to help us out. We have amazing friends that have given more to us and helped us in so many ways. We are so truly grateful and hope they all know how blessed we have been by them. And most of all we serve a God who has blessed us with His limitless goodness over and over again and taught us more about the power of prayer than I ever thought possible. We learned in our church sermon last week about the Lord's supper being the first thanksgiving and how we can start over forgetting the past and living for the future because we worship a God who sacrificed His own son for each of us. We will never forget the hardships these past few months have brought, but with God's grace and mercy we have an amazing future ahead of us with not only our sweet Thomas but now with our beautiful Lily. Thank you Jesus and thanks to all of you for continuing to pray for all of us. Happy Thanksgiving to all of you!

Lily has made incredible progress over the past couple of days. She is now 3lb. 4oz!! We were able to play dress up with her yesterday for the first time!! It was wonderful! She is now regulating her temperature in her isolette and doing great with it. The isolette temp. is set at 30.5 C and she has to keep her temp with it set at 28 C before she can come out of the isolette. So we aren't far away from that. Her feedings were increased to 30cc which is 1 oz today. And we found out today that we get to feed her a bottle for the first time!! We also got to cradle her last night for the first time. It was amazing!! We got to hold her and see her face at the same time!! Truly wonderful and long overdue!!!

Wednesday, November 26, 2008

Putting on the pounds

Lily just keeps on putting on the pounds. She is 3lb. 3oz. tonight. I get to play dress up with her tomorrow and see how she does regulating her own temperature. Yea!!! I have been looking forward to this for 2 months! I just bought some precious preemie clothes so there will definitely be some pictures tomorrow!!!

Lily had a few little episodes with heart rate and oxygen levels decreasing that caused some concern overnight, but she received some blood today and looked so much better when I left her tonight. Please pray that she continue to do well on the nasal cannula and that her oxygen requirements decrease. Her doctor mentioned putting back on CPAP if her oxygen requirements go up much more. I don't think I could handle that again, so I am trusting that God will hear our prayers again and be faithful to answer. I know Lily can do it without the CPAP. I also would ask that you pray that she remain free of infections. I pray you all have a wonderful Thanksgiving. We have so much to be thankful for.

Tuesday, November 25, 2008

Big Girl...

So long...

So sweet...

Lily is growing like a champ. She is now 3lb. 2oz.!!! So hard to believe how far she has come. We know it is because of God's grace and mercy and answering all of your prayers for her. She is doing well in level 2. They increased her feedings today to 28cc every 3 hours. She is tolerating them very well. She remains on the nasal cannula oxygen and is hanging out with it. I would ask that you pray specifically that she be able to start weaning off of the oxygen. Thanks.

Sunday, November 23, 2008

Mixed feelings

Sorry I haven't updated in a few days. This weekend just flew by without much time to do anything productive. I also don't have pictures because the computer was acting crazy, sorry.

So, Friday was a big day for us. I went to work for the first time in 3 months. It was really hard to do, but once I was there, I actually enjoyed it. It was a nice break, I guess, if I can say that without it sounding awful. It really helped my brain get back in gear. I felt like I was moving in slow motion for awhile until I got back in the swing of things, but it was great to see all of my wonderful coworkers who have been so supportive. It was also a big day for Lily, who was moved to a pod in Level 2. This is a step down from level 3 and means she is doing very well. I have had mixed feelings about this move. I know it is a step forward, but we loved her nurses in level 3 and felt very confident that she was always being cared for. Not that level 2 nurses won't be great as well, but there are more babies to nurses now. Anyway, you can pray that I can continue to trust that the Lord is still in control and that I will feel a peace knowing that Lily is still receiving the best care.

Lily is now 2lbs 15oz!!! Yea, she is almost 3lbs!! She is tolerating 26cc feedings and it won't be much longer until they will try to bottle/nurse feed her. She is still on nasal cannula oxygen at 1 liter. They hope to continue to be able to wean her off of this as she grows. Her second eye exam last week came back normal. Praise God. Thanks for praying for this. They will check again in 2 weeks. Her next big milestone will be to be able to hold her temperature on her own so that she can come out of her isolette. She has to gain more weight before this can happen.

Please continue to pray for her lung development, that she be able to wean off of the oxygen; that her eye exams will continue to be normal; that she continue to tolerate her feedings and gain weight accordingly and that she remain infection free. We thank God daily for all of you and how you are helping our precious baby overcome so much. May God bless you all!

Thursday, November 20, 2008

Doubled Up

Too bright...


grinning...checkout the grandpaw gums...

pulling on tube...

Lily has officially doubled her birth weight and more. She is a whopping 2lb. 13oz.!! Yea, let's keep those pounds coming. She has had several big days this week. She is still on high flow nasal cannula at 1 liter and doing well. She seems to enjoy it a little too much and actually forgets to breathe etc... She has had several episodes of apnea and bradycardia especially today which of course makes me nervous, but her nurse says this is normal for her but will continue to monitor her closely. We are still waiting for the second eye exam, so continue to pray for good results with that. They also decided to stop her Lasix today, so pray that her lungs do well without it and that she doesn't begin to hold onto fluid. All in all she is doing amazing and we are so thankful and blessed, but at the same time it is so difficult to have her so far away from us. I know the homecoming is in sight and just keep praying that it is sooner than later. Thanks for your prayers and support.

Wednesday, November 19, 2008

Good job Lily

Sound asleep...

Checking it all out...

Yea, Lily is still on nasal cannula and doing wonderful. She was doing so good that they turned her down to 1 liter. Way to go Lily!!! She is still eating through her feeding tube and tolerating her 25cc feeds every 3 hours. She is still 2 lb. and 11 oz. She is loving being able to move her head all around and seems to sleep so well now. I just love looking at her. It takes everything in me not to pick her up and take her with me when I leave. We need her to start putting on the pounds so she can play dress up and come out of the isolette. We are just so thankful for her progress and pray that she continue to do so well and impress her doctors.

Tonight I would like you to pray for another baby who's mom I met through Lily's past doctor. They are having a tough time right now and probably facing heart surgery this week. Pray that they experience God's peace and comfort and that their baby boy will be infection free and that his little heart will heal. Pray that I can be there for them however they need me and that I can share fully God's goodness and love.

It is so overwhelming how many babies are there and how sick some are and how long some have been there. It can really upset you if you let it. But I know God has plans for our precious Lily and that He will carry out the good work He has started in her. Have a great day!

Tuesday, November 18, 2008

Precious Face...

loving her paci now that cpap isn't in the way...

Sucking on fingers...checkout the sweet wrinkled head...

Precious Face off of Cpap...

Our precious baby girl without anything on her face, yea...

Yea, Lily was taken off of Cpap today and is now on nasal cannula oxygen. This happened much quicker than we expected but so far she is doing amazing!! She continues to tolerate her feedings and remains at 2lb. 11oz. We will begin to get a more accurate weight now that she doesn't have the extra tubings etc...

I can finally see her precious face!! Looking into her sweet eyes I was overwhelmed by God's goodness and faithfullness. She has done so well and overcome so much while bypassing so many complications that she so easily could have had. When this whole experience started I often found myself wondering why? Why did I deserve to have my pregnancy cut short, why did we deserve to have a premature baby? And even now I still have feelings of fear, guilt, and regret, but for the first real time today I thought what did we do to deserve all of God's blessings. What did we do to deserve for Lily to be doing so so well. But it is nothing I have done, nothing Greg has done. It is all because of Christ and His sacrifice for us. Because of that we can have a relationship with our heavenly father who hears our prayers and so faithfully answers.

When I was in the hospital before Lily was born I read a verse that really stuck with me. It said "I will give thanks to the Lord with all my heart; I will tell of all Your wonders. I will be glad and exult in You; I will sing praise to Your name, O Most High." Psalm 9"1-2
I told Greg then that when God brought us through this difficult time I would tell of all His wonders of all He has carried us through and how He has dictated each day and all of Lily's progress. So that is what I hope to accomplish through this blog and in our daily lives. That above all God will be glorified. I know we still have a long road ahead and that He doesn't promise us that it will all be easy but I know that whatever comes our way we can get through it with Him and Him alone.

"For you O Lord, have made me glad by what you have done. I will sing for joy at the works of your hands." Psalm 92:4

Monday, November 17, 2008

Wide awake...


Wide awake...

baby sneeze...

Lily had another good day. I really enjoyed my time with her today. The nurses let me do a lot of her care like changing her diaper, taking her temperature, cleaning her eyes and mouth and sometimes changing her position. I love it all. It makes me feel like a good mommy and that I am bonding with her. All of her lab work came back normal today, so thank you for praying for that. Her eyes looked so big and pretty today and she continues to look more and more like a newborn baby.

We continue to pray for her eye exam to go well this week, for her to remain infection free, and for her lungs to continue to get stronger and for her to do well on the cpap. We appreciate your prayers as well. I am experiencing more and more of God's goodness and grace as He repeatedly answers our specific requests and as I watch my precious baby get better and better every day.

The picture above is of Thomas getting busted after pulling out my craft box and putting everything possible on him and spreading the rest of the stuff everywhere. The look on his face is priceless. It is actually a look I see more and more on him as his little mischievous personality develops. He can be so sweet and loving one moment and screaming "zip-it" at me the next. Oh, the joys of having a 2 year old!!

Sunday, November 16, 2008

Weekend visit

Say Cheese!!!!

Sleeping with the frog Thomas picked out for her

Loving the frog

Not letting go

We have had a good weekend with Lily. Greg spent Saturday with Lily and I spent today with her. She is continuing to do well with her Cpap and feedings. Her belly was much better on Friday and they actually increased her feedings to 25cc today. Her O2 requirements continue to decrease for the most part which means her Cpap days may be coming to and end sooner than later. She is getting cuter and prettier every day. I long for the day I get to see her sweet face without any tubes etc. on it and finally get to truly holder. She is now 2 lbs. 10 oz. Yea!

Thomas picked out a gift for Lily that you can see in the pictures Lily appears to love. He actually sent her a frog and pink cow that hold hands. He said he was the frog and Lily was the cow. Too cute.

You can pray that Lily continue to grow and get stronger on the Cpap. For her eye exam this week to go well with good results, that she remain infection free and that lab work continues to come back with good results.

Thanks so much. Have a good Monday!!

Thursday, November 13, 2008

Sweet Little Hand

Where's Lily?

"Don't take my paci"

"Sound asleep"

"Sweet little hand"

Lily has had a good couple of days. She has amazed her doctors and been able to stay on the low CPAP setting and keep her oxygen requirements low. Yea, Lily!! I think she is trying to tell them to get it off... She finally had her long awaited eye exam last night. So far her eyes look good, but will be rechecked again next week. Thanks for diligently praying for this.

She is weighing in tonight at 2lbs. 9oz. Her feedings are continuing to go well, however this morning she gave her nurses a little scare. Her belly was much bigger than it had been so they were worried about her digestive system. They did an xray of her tummy and it only showed air. Praise God. We are waiting on the results of blood cultures they sent today to make sure there isn't any underlying infection.

Please pray that her digestive system is still working and growing as it should and that she doesn't have any infection. We also are praying that her eye exams will continue to be normal and that she continue to do well on the CPAP. Thanks so much.

Monday, November 10, 2008

Thank You...

holding mommy's finger

check out the chubby cheek

holding on to her paci

sucking on paci

wide awake

Let me start by saying you better be ready for what you ask the Lord for when you ask it. Last week Greg and I had said to each other that we hoped Lily would be able to start weaning down on the CPAP by this coming Friday because that is when the attending doctors change. We have loved the one she has now and agree with her philosophy on CPAP and keeping the vent tube out. So, we said lets pray for it. Well she is now on CPAP of 5!!! This is the lowest setting she will be on!! And it is a week earlier than we had asked for her to be at CPAP of 7. Granted the weaning process went a little faster than her attending doctor would have done because the weekend doctor made the changes, but I am just so thankful and in awe that Lily was even able to tolerate it.

So, I want to thank all of you for praying for our precious baby girl so diligently and without ceasing. Thank you for having faith and believing that when you pray He will answer. Because He has answered time and time again. I have been blown away by the generosity and graciousness we have received. I have been overwhelmed with all that has been given to us without hesitation and from some people we hardly know and some we have never met.You all have truly shown me what it means to be a servant of Christ. It makes me look at myself and wonder would I have been as generous as some of you. So thank you. Thank you for teaching me and exemplifying Christ's commandment to love and serve one another. I can only hope and pray that I can one day not only repay the favors but that I will have the opportunity to serve you all as well.

Now for the update. Lily's feedings were increased to 23cc every 3 hours. 3occ is equal to an ounce, so we are almost there. Her blood counts were good today so no blood for her, yea. They have also stopped the added sodium, which is a good sign. We have been told that the opthamologist is coming next Tuesday. Keep that exam in your prayers. Lily is now a whopping 2 lbs. 12 oz!!!! She has doubled her birth weight! She is beginning to look more and more like a normal newborn baby. She has found that she really likes her paci and it seems to soothe her also. You can continue to pray for her to do well on CPAP and that she will be able to stay at 5 and keep her O2 concentration down, for her to continue to grow and develop as she should, to remain infection free, and that her eyes will check out OK.

Thomas continues to be a trooper while also testing my patience. He cracks me up with the things he says and how he comprehends things. Tonight he stuck a mini cheeze it up his nose. This was a first for both of us. He thought it was funny until he couldn't get it out. He finally was able to blow hard enough for me to grab it, lovely. He is still as cute as ever and for the time being he loves his baby sis Lily.

"Blessed be the God and Father of our Lord Jesus Christ, who according to His great mercy has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to obtain an inheritance which is imperishable and undefiled and will not fade away, reserved in heaven for you, who are protected by the power of God through faith for a salvation ready to be revealed in the last time."1 Peter 1:3-5

Saturday, November 8, 2008

Getting Bigger

Thomas loving his ice cream

Lily with her paci

Too bright...

Cuddling with her cozie

We have had a good week with Lily. She is getting stronger and doing much better on CPAP. We were very excited when they weaned her down to a CPAP of 7 on Friday. She started at 8 and needs to get down to 5 before they are able to take her off. Her Oxygen requirements are also decreasing which is always a good sign. She continues to tolerate her feedings well. She is taking 21ml every 3 hours and is now a chubby 2lbs 7oz.!!! Yea!! You can actually see a little fat on her legs and cheeks!!

I have enjoyed holding her so much this week. She is doing much better with it so I can relax a little more now. Each time I hold her it only increases my desires to cradle her in my arms. I can only imagine how amazing it will be when that day comes!!! Greg got to spend the whole day with her today while Thomas and I had a day together. We both enjoyed our day but can't wait to be together.

Thank you all for your continued support and prayers. While we had a different nurse every day this week on day shift, they were all very good. God has continued to show us that nothing is too small to pray about and that He hears all requests. You can continue to pray for her lungs to keep getting stronger and that she continue to be able to wean off of CPAP. We are also still waiting for the opthamologist to check her eyes, so we pray we will get more good news from her. We also pray that she continue to be infection free. Thanks so much.

Tuesday, November 4, 2008

Dressing up

"pumpkin t-shirt" (thanks Vickie)

"wide awake"
Lily has had a good couple of days. She is getting stronger on CPAP and continues to tolerate her feedings well. She is now back to 2 lbs. 4oz. She is 14.07 in. long now. Looks like she will be tall like her Daddy, Yea!!

You can continue to pray for her lung development, that she will begin to wean off of CPAP, that her eyes will check out OK this week, and that she will remain infection free and will continue to develop and grow as she should.

I would also ask that you pray for us to remain faithful, trusting, and fully believing that God is still in control. We are struggling with Lily having different nurses daily and nightly. Now that she is not considered a level 3 baby, her primary nurse is being pulled to a sicker baby. While we are so thankful that she is doing so well, we also know that she has a long way to go and if her cpap is not in the right position it can effect her greatly. The nurses that know her know what she needs and will work with her before increasing her oxygen level while nurses who don't know her, will just increase the oxygen. This isn't good for her because too much oxygen can actually harm her eyes, brain, etc... Please pray that we will not become anxious but will continue to pray without ceasing, believing that God will finish this good work that He has started.

Sunday, November 2, 2008

2 lbs. and more

That's right...Lily hit 2 lbs. last week and last night was 2 lb. 4 oz. What a long way she has come since birth. It is so cute to see her now as she is starting to put on weight, she is maybe even starting to get a little fat roll on her arm. Even though we can't spend all the time with her, we have learned so much about her over the past six weeks. For instance, she LOVES tummy time, can't stand to be woken up, doesn't really like dress up yet (you will see this in the Halloween pictures), she likes to make her mom nervous, she loves to be held, and is definitely going to be a great little sister.

Lily has been sending home "happies" to Thomas (thanks Laura and Whit) as we are trying to make Thomas excited about having a little sister. He doesn't fully get it, but today he said he wanted to give Lily a present and he constantly asks if we are going to the hospital to visit Lily.

Lily is still on CPAP and her oxygen concentrate necessary continues to lower and be stable. This is good news as the doctors will soon begin to try and wean Lily off of CPAP. The opthamologist is also scheduled to visit Lily this week to check for proper development of her retinas.

Halloween was a lot of fun, Thomas dressed up as a doctor and we did plenty of trick-or-treating and Holley was also able to dress Lily up in her first Halloween outfit. Thomas might have a clear path as a politician with his front door manners; hugging mamas, and kissing babies. Seriously, we had to bribe him to leave some front doors as it seemed he was trying to strike up a conversation. Also, given the opportunity to request a certain number of candies, he said "FIVE" with such great confidence.

We have really been blessed over the past six weeks through our church and the sermon series our pastor is preaching through. The series is titled Consider: Discussions on Faith from the Gospel of Luke. It has really been tremendous to see and relearn just who Jesus is and what true faith in him looks like. If you are interested, you can download the sermons by clicking HERE.

I will leave you with a passage of scripture from the message this morning. The entire passage was Luke 12: 13-34.

(22) And he said to his disciples, "Therefore I tell you, do not be anxious about your life, what you will eat, nor about your body, what you will put on. (23) For life is more than food, and the body more than clothing. (24) Consider the ravens: they neither sow nor reap, they have neither storehouse nor barn, and yet God feeds them. Of how much more value are you than the birds! (25) And which of you by being anxious can add a single hour to his span of life? (26) If then you are not able to do as small a thing as that, why are you anxious about the rest?