100 DAYS OLD!!!!

Samford waiting for the hotdogs to fall off the counter...

Papa Carl and Thomas having fun...

Aunt Shelby and Lily...

Papa Carl and Auburn Lily...

Gran and Lily...

Lily finally relaxing after trying to feed...

By the time most of you read this Lily will be officially 100 days old!!! It is unbelievable the course she has been through and the journey our family has taken over the past 100 days. It has been a very trying time for all of us, but God has delivered us from so much fear, doubt and anxiety.

Lily has been able to keep one tube out! We had been praying so hard and long for her to wean off of her Oxygen Settings and for now it appears that prayer has been completely answered. She is still off of oxygen and continues to maintain her blood oxygen at acceptable levels. Please continue to pray that she will be able to stay off O2.

Unfortunately, the nurses had to replace her feeding tube early this morning because Lily's reflux was unbearable. It is painful for us to watch her as she deals with this trying to take a bottle. The doctors have adjusted her dose of Zantac and hope that it will correct the problem. As of this post, Lily was able to take her minimum through the bottle at 9:00 pm, which is an improvement from this morning. However, she needs to be taking eight of these bottles per day, and showing that she can still gain weight consistently. We are convinced that Lily is capable of completing eight bottles per day (barring reflux pain), and are concerned that Lily will begin associating pain with bottle and possibly regress on her feedings. Please pray this does not happen.

Her blood pressure is still elevated, but not near as high as it has been in the past. The doctors are actively monitoring this, and attempting to piece together an idea of why it is happening.

She will also be having an MRI next week to check brain function. This is a normal procedure and she is showing no clinical signs of issues. We have been told since birth there will be an MRI at 38 weeks gestation or upon discharge.

We long for Lily to be at home with us and know that will come in due time. For now we would ask that you pray for resolutions to her reflux and blood pressure issues, that she is able to stay off of Oxygen, and for her MRI next week.

Lily's precious face...

Lily's hospital room

peek-a-boo

sleeping so well without any tubes...yea!

Wow, what a day we have had so far. Lily's doctor called me this morning on my way to the hospital to give me an update on her. I received amazing news when she told me that she was going to take her feeding tube out and try to feed her all 8 bottles today. She then told me that Lily was pulling her oxygen off on her own and doing well without it so we could take her off of oxygen and see how she does. I was shocked and literally speechless. When I hung up I was so overwhelmed with God's presence and goodness that it took my breath away. The tears immediately began to fall and I could just hear God saying, "I told you so," "I told you that my timing was perfect."

I of course couldn't wait to get there. Seeing her precious face without any tubes filled me with such joy and happiness I could hardly contain myself. It was wonderful. She seemed so peaceful. She has done really well so far without the oxygen. It just amazes me that two days ago her oxygen seemed to be going up, and now she was even eating without it and doing wonderfully. Another answered prayer.

She did really well the first part of today eating, but her acid reflux has been really bad this evening and tonight. They were hopefully going to get her Zantac increased according to her weight gain and maybe start thickening her milk. Please pray that these simple things will help her immediately and that this won't slow her feeding process down. Tonight she weighed 4lb. 14.8oz. She was also seen today by a nephrologist (kidney doctor) to evaluate her blood pressure and any potential kidney involvement. She basically said they couldn't find anything clinically wrong and that they would not put her on blood pressure meds unless it continued to increase. They will be following her and probably repeat her renal ultrasound and recheck her urine. I was glad they looked into it and hopefully this will just be something she outgrows without any long term problems.

Thanks so much for your prayers. We are seeing them being answered so specifically. What a blessing. Please continue to pray for her feedings to go well, that her blood pressure decrease, that she be able to stay off of oxygen, and that she would continue to grow and develop as she should. Thanks so much. To God be the glory!

Bath Time...

Mommy giving Lily a bath for the first time...I loved it!!!

All clean and dressed up...

I am at the hospital and couldn't wait to tell you about my wonderful evening with Lily tonight. I came to see her in time to nurse her for her 6pm feeding and gave her a bottle to finish up. She did really well with both. I then got to give her a bath for the first time! It was sooo much fun! It gave me such joy and happiness, I can't even describe it. I felt so motherly. She has been putting on quite a show. Lifting her head and figuring out how to pull the nasal cannula out of her nose. She was cracking me up, moving her head from side to side and pushing up with her feet. She did great with her bath, not crying at all and her oxygen requirements were as low as they could go during the whole bath. I was able to pick out her outfit and dress her too. I of course picked out a cute dress with a matching hat!! Tonight she weighed 4lb. 15.3oz.!!! So close to 5lbs.

Thank you all for praying specifically for her bottle feedings and blood pressure. While she did awesome taking her bottles for both Greg and I, her blood pressure continues to creep on up. I am trying really hard to not stress about this. As her doctor says Lily is not showing any other clinical signs that would correlate with a high BP, but as a mom I just want to know why and know that it is not causing any long term problems. Pray that we might get answers and that it would begin to decrease.

Today we had a sermon about what captivates you. Talking about what is true worship and why we worship God. But what stuck out to me was talking about what satisfies us or what we try to do to satisfy us. And the end result is that nothing we do can truly satisfy us other than our relationship with God. I realized that I am trying to get satisfied with Lily taking her bottles, with Lily progressing, that each day she has a good day, I think that I am satisfied. But in reality I keep going back to the same feelings, the same emptiness, fear, anxiety, because as wonderful as her progress is, it is only temporary and I can only truly be satisfied by God's amazing grace, hope, peace and joy. So, as Greg and I talked about how far Lily has come, we decided to look at her progression in a different light. To take each little achievement and be thankful and to remember what all God has done for her and for us, and pray believing without a doubt that He will complete this good work He started in Lily and that she will come home on His timing not mine.

Please continue to pray for her to do well with her bottle feedings, that her oxygen requirements would decrease, that her blood pressure would go down, and that we would take advantage of all opportunities to give God the glory for all He has done for us.

Lily's Fit...

pulling her nasal cannula out...

Samford and her new toy...

smiling Lily...

Lily without a feeding tube...wish it could have stayed out!

This has been a difficult week for all of us. While Lily continues to make improvements and is doing well, it didn't take away the pain of having to leave her behind on Christmas. In some ways Christmas was better than I thought it would be, but in other ways it was the most difficult thing I have ever experienced as a mother. Three months ago when she was born, I just knew that she would be home by now. I didn't care that the doctors etc. said to plan on her being in the hospital until her due date. I felt like by 3 months she would be ready to come home and that God knew my desires to bring her home. So now that Christmas has come and gone I would be lying if I said I wasn't a little let down.

I know that God's timing is not my timing and that Lily has come a long long way, and yes it could be so much worse. But by now, my anxiety over her coming home has risen tremendously. I don't really know how to explain it except to say that I am running thin and feel so much more weary more often. I am telling you this not so that you feel sorry for me but because I want to be honest. God doesn't tell us that the road will always be easy. He doesn't tell us that when we follow Him we won't have trials. But He does say that He will never leave us and that there is nothing we can't do with Him by our side. He alone gives us the strength to leave Lily in the hospital each day and He alone gives us the strength to do it again and again. And because of our relationship with Him we have hope. Hope that Lily is going to be OK. That one day soon we will all be together at home. Without that hope, I would not have made it this far.

God knows our needs before we even know them ourselves. At each of my toughest moments, He always does something to remind me that He is there. It is usually through one of your emails or cards, phone calls or texts. Hearing that our tiny baby has encouraged someone in their spiritual lives, that they have changed because of her, that they have a new outlook on life all because of what God is doing in her life. Those moments are truly overwhelming and give us the continued faith we need to keep going. Thanks for sharing.

We had a sermon on learning to rejoice in our waiting. I have really been trying to practice this. So here are some ways we have been rejoicing this week. Lily is now taking 6 bottles and one breast feeding a day. She is now taking 49cc at each feeding. As of last night she was 4lbs. 12oz. We also really rejoiced when the eye doctor told us Wed. that Lily's eyes were good. There was nothing to worry about and the trace of ROP would correct itself. Yea!!! We also were glad to hear that her renal ultrasound didn't show anything wrong with her kidneys and that her urine culture has been negative so far.

So for now, I am going to focus on the positives and pray believing that He hears that Lily will be home soon. You can pray that she continue to do well with her bottles and that she be able to increase to 7 bottles quickly, that her oxygen requirements continue to decrease, that her blood pressure will get better, and that she will continue to grow and develop as she should. I would also ask that you pray for us to continue trusting without wavering and that we would take every opportunity to give God the glory for Lily's progress. I thank God each day for all of you.

Christmas Picture Post

Thomas starting to eat his Christmas Cookie...

Half way through the cookie...

And this is how he ended up at the end of the cookie...

Thomas riding his new scooter Christmas morning...

Leaving cookies for Santa...

Don't forget about the reindeer...

Lily is ready for Christmas...

Santa and Lily... "Hey Santa I want to go home"...

Surprise visit from Santa...

Mommy, Daddy, and Christmas Lily...

Sweet baby girl...

Ready for Christmas...

Make a Smilebox photobook

HAPPY THREE MONTH BIRTHDAY LILY...

Tummy time...

Peek-a-boo...

HAPPY 3 MONTH BIRTHDAY LILY!!!!

Lily did better today taking her bottles. After a slow start she is finishing strong completing the past 3 bottles. Go Lily. Her OT (Occupational therapist) came to feed her today to evaluate her and thought she was doing better than last week. Lily always seems to good the few days after her therapist has been with her, so I said she needed to come visit Lily more often! I appreciate the OT coming to help her today because I know how busy she is with the holiday schedule etc... I also have to give kudos to Lily's current doctor. She has been so great to work with and so compassionate towards all of us. I requested that the OT come see Lily and she made it happen. She also has been patient with me and my impatience with wanting Lily to super succeed all the time and my need to always want an answer for Lily's current condition etc. Because Lily's blood pressure is and has been elevated, she ordered a renal ultrasound to check Lily's kidneys. I kind of pushed for this but her doctor was very understanding and didn't make me have to ask twice or feel bad for asking. Thanks Dr. Wong!!!

Lily is 4lb 9.7oz!! She is doing well with her oxygen, staying anywhere between 21-30% on a quarter of a liter. She is doing well keeping her temperature up as well. For all of this we are so thankful. Please pray that her blood pressure get better, that the ultrasound will go well, and that she continue to do well with her bottle feeding.

I appreciate all of your words of encouragement to me and your prayers. I am definitely having a much more difficult time right now than I have had. While I am so thankful to be where we are and so blessed by Lily every day, it doesn't take away the fact that we have a baby in the hospital. Please pray that we find ways to rejoice while we wait patiently for Lily to be well enough for us to bring her home. May God bless you all during these next few days while we get ready to celebrate our Savior's birth.

Ups and Downs...

Santa's little helper...

sweet hands...

Three amigos...Thomas, Garrett, and Riley tailgating before the Katy High School State football championship game

Daddy and Thomas at the game...Go Katy Tigers!

"so you think you can dance"... next winner!

So we have had some ups and downs over the past couple of days. This seems to be the trend lately. I am hoping the days of the downs are near over and we will have more ups. Thursday was pretty stressful for me for several reasons. I finally came to grips that I was going to have a baby in the hospital over Christmas. Also realizing that Christmas was so soon, I began to have feelings of regret for not doing more Christmas events etc... with Thomas and of course I hadn't done hardly any Christmas shopping. To sum it up, I was just fed up with everything. I am going to leave it at that.

But, God heard my cries for help when I had no words left to cry or how to even feel anymore. He new what I needed most. He gave me good news when Lily's oxygen was turned down to a quarter of a liter!! This is a huge step. She could go home on this amount if she had to. Her requirements were also low. While this was great, she began to not take her bottles again. We finally determined that she was having acid reflux issues so they started her on Zantac last night. What a huge difference it has made. Since her first dose she has taken all of her bottles!!! Yea. Today will be the first day she took 5 if she takes her last one of the day. She is continuing to grow, weighing 4lb. 8.7oz!!! She is so cute and cuddly. I am soooo ready to have her home so we can nap together whenever we want!

Thomas is doing well with his toddler bed. It still scares me a little in the morning when he shows up at my bedside. He is so sweet and in his barely awake voice he asks me "going to hopital mommy to see Lily?" What a great big brother he is going to be. He and Greg went to Katy High School's state football championship game at Reliant stadium today. He had a blast with his friends and watching the game. He told me over the phone that he loved football and he was going to deep snap. This of course was instigated from daddy!

Please continue to pray for Lily to do well with her bottles and oxygen requirements. I also want you to pray for her blood pressure. It is staying borderline high and they have tested her urine twice for potential kidney problems . The results were conflicting so not sure what are next step is. I want the tests to be negative but I also want an explanation. Thanks.

Two New Beds for Two Big Kids...

Thomas in his new big boy bed...

Lily in her new bed...

Best picture ever!...

wide awake Lily...

Check out Lily's new crib...

Lily has had another great day. She completed all 4 bottles again and her oxygen requirements have been pretty low also. She is loving her new bed and staying nice and toasty so far. It was too precious and exciting to see her in there all by herself. It makes leaving her even harder. I told her doctor today that I was going to get a small portable oxygen tank and put Lily in my bag and make a run for it. As much as I want her home I want her to be completely ready before she does come home. Her blood pressure was better today. It still makes me a little nervous just waiting to see what happens with it, but I am trying to be patient and trust that it will work out just like everything else has. She is weighing in at 4lbs. 5.3oz.! Grow Lily grow!!!

Lily had a small reunion in her room today when her two primary nurses from Level 3 came to visit her and her new primary nurse as well as her doctor were all by her side admiring how big she has gotten. I wish I had taken a picture. All of these people mean so much to me and I will never forget them or how they have cared for my sweet Lily.

Thomas is as funny as ever these days. I was trying to remember some new phrases he has said lately that make me laugh. Yesterday when we were driving home he told me "don't crash the car mommy." "Keep it on the contrete."(meaning concrete) Not sure where that came from. I am being reminded to watch everything I say because he repeats it all! I was really frustrated with traffic today and said, "you have got to be kidding me, so then every time we stopped or slowed down Thomas said, "you kiddin me."

Thomas was also moved into his new toddler bed this week. It was really hard to decide when to do it. He loves his crib and has never tried to climb out. Luckily Greg just made the switch Monday night when I was still with Lily or I might never have agreed on a day. He looks so sweet in it and so grown up!

Please continue to pray for Lily's oxygen requirements to decrease, for her to complete her bottles, for her temp. to stay up, for her blood pressure to be good, and for her not to have any bradys (heart rate dropping below 70).

Thanks so much!! May God bless you all and meet all of your needs and may He continue to show His goodness and grace as Lily continues to beat the odds!

Good job Lily...

Just a quick update to let you know that Lily had a very good day today. Her blood pressure was much better. Still a little borderline high but hopefully will continue to get better. Thanks for praying for this. She also completed all 4 bottles today!!! And she is now 4lbs. 6.2oz! Her oxygen requirements were down some today as well. I received even better news when they told me she was moved to an open crib today and so far has done really well keeping her temperature up on her own. I of course was at work today for the second time in 4 months and missed the big move. go figure... We are super excited for all of her improvements and can't thank you all enough for your prayers and support. He hears without a doubt and is so faithful to answer each and every time. I promise to have pictures tomorrow!

Please continue to pray for her blood pressure to improve, for her oxygen requirements to decrease, to continue taking her bottles well, and for her to keep her temperature up on her own. Will you also pray for my friends baby who remains in the NICU. Please pray that he be able to come off of the ventilator soon and that his parents will have true peace in Him. Thanks

Just an Update...

Lily loves to stretch out...

Look at my cute outfit and hat...Thanks Charlsie and girls...

Daddy and his baby girl...

Too sweet...

Where to begin. It is always hard to update after a few days have passed since the last update. So I will start with the good news. Lily is now 4lbs. 5oz. She is really growing now! Yea! She has the cutest double chin now. She is 16.9 inches long. We received great news on Sunday when her oxygen was decreased to half a liter nasal cannula!! This was a huge step in my eyes. I struggle with the oxygen daily, but this was so exciting. She has done well with it keeping her requirements fairly low. Thanks so much for continuing to pray for this. She has to get to a quarter of a liter before we could take her home on it, but hopefully she will be off it completely. They have also been able to wean the temp. down on her isolette and she has done well with it so far. Another degree to go before we can attempt to put her in an open crib. Yea!!

The only negative news is that she is not taking her bottles very well. She has not finished any of them today and not too many yesterday. She is attempting to take 4 a day in 30 min or less and she is now eating 42cc each time. The occupational therapist came to assess her today to see what could be the problem. She said she was sucking very well but she was really congested so it was hard for her to breathe. Hopefully with some suctioning prior to eating she will begin to do much better. They are also watching her BP because it is trending a little high. They aren't too concerned at this point so please pray that it works itself out and there are no underlying issues with it.

Prayer requests: That she do well on half a liter and her oxygen requirements decrease, that she begin to take her 4 bottles a day, that her temp. begin to regulate itself so she can come to an open crib, and that her BP does not go up anymore.

Thanks so much. Have a great night.

How sweet it is...

Loving the icing...Do I really have to decorate?...

Forget it...This looks too good...

Too good to wait...

Sweet baby girl...

Thomas eating candy off of gingerbread house...

Are there other people here?...

What a week we have had so far. Tuesday my sweet friends had a baby shower for me. It was so special and really meant so much to me to have it. It was a little weird not having a big pregnant belly at your own baby shower, but fun anyway. Lily got some precious outfits, blankets, burp cloths, and even a tiny ring!! I don't what I would have done these past few months without these amazing giving friends I have been blessed with. Thanks girls, I had a blast.

On Wed. Thomas and I went to playgroup where we made, or attempted to decorate gingerbread houses. As you can see in the pictures and videos, Thomas couldn't grasp the idea of decorating with candy! He thought it was much to yummy not to eat it. I of course had high hopes of decorating a cute house to display at home, but what can you do. He enjoyed it so much he even fell asleep in the car holding onto it. He didn't trust me to take it from him. Too funny.

Lily continues to have a great week. She is now...4lb. 2oz.!!!! Yea! Can you believe it she is already over 4lb.? Crazy! She has been finishing her 4 bottles since Tuesday and doing very well. She is still on the one liter nasal cannula, but her oxygen requirements have been low. And today we received even more amazing news, when the eye doctor told me that last night she did not see any signs of ROP!! What? My exact words. I didn't know it could resolve itself in a week, but than again, Lily has the ultimate Physician taking care of her so anything is possible!! Praise God!!! His blessings upon us are overflowing. Thanks for praying for this specifically. He listens!

Please continue to pray that Lily do well with her bottles and hopefully increase to 5 bottles soon. Pray that her oxygen requirements continue to decrease and she be weaned to half a liter, and that she begin to hold her body temperature so that she can come to an open crib. Please pray that Greg have a safe trip home tomorrow as well. Thank you all so much for your prayers and support.

Sweet Visit...

Mommy and her precious angel...

Taking her bottle like a big girl... I promised her a treat if she took it all!

DidiPop and Lily

Didi and Lily

Pretty pink gown...We barely got it on her, she is getting so big...

moving all around...

What can I say but thank you. Thank you all for praying for Lily and for me last night. God never ceases to amaze me with His goodness and faithfulness. He heard my prayers and answered. And not only did He answer a portion of them He really answered. Lily had an amazing day, amazing...She finished all four bottles like a champ today. She was much more awake and attentive than yesterday and her oxygen requirements were the lowest they have ever been! Rejoice in the Lord always and again I say rejoice. That song continued to play over and over again in my mind today because that is all I could think of each time I looked at Lily. God must be getting tired of my wavering faith by now. He has given me every reason in the world to trust Him ALWAYS and yet my human nature allows the smallest bit of fear to creep in and downward I go. Thank goodness He is merciful and forgives and nothing I do can ever separate me from His Love.

Lily had a wonderful visit with her Didi and DidiPop, (aka Greg's parents.) They were able to hold her for the first time and see the amazing transformation she has had from those first few weeks until now. I guess she was showing off for them today. Whatever it was, I will take it again and again. Not exactly sure what her weight is because the nurse wasn't at her bedside when I last called, but she did say she gained weight. Yea!

I have to tell you a funny Thomas phrase. So, Sunday night we painted Lily's room. I tried really hard to pick a light pink, because I have always dreamed of doing a precious girly room. However I am not a pale pink person and neither is Greg so we went back to the paint store and now Lily's room is a bright, bold watermelon pink. Yes, I know it sound hideous, but I really think it will look good with the bedding etc.. I will send pictures later. Back to Thomas, Monday when he woke up he did a double take when he passed Lily's room and went in and said, "mommy Lily's room is tomato pink." So, you know it must be bright if my two year old thinks the room is tomato pink. Too funny... I hope to redeem myself with this room when it is all finished.

Please continue to pray for Lily to have the strength to finish her bottles, that her oxygen requirements continue to decrease so she be weaned down to a half a liter, that she maintain her body temp so she can come to an open crib, and that I will always trust and believe no matter what the day holds. Thank you all so much. Where would we be without you.