Going home outfit...and Thomas

Saturday, Greg and I spent the day with Thomas, shopping, and playing at the mall. We went to rain forest cafe for lunch...his choice!

Thomas eating his huge ice cream cone after being good while getting his haircut...whatever works!

Oh yea...it was everywhere!

Lily enjoying all of her precious gifts from our dear friends in Cleveland, MS!! They sent a box full of goodies from the cute store, Punkin Patch in downtown Cleveland. Love, Love, Love all of the sweet monogrammed things. I was completely surprised and overwhelmed with gratitude when I opened the box. We are truly blessed by such amazing people. I don't know what we did to deserve such wonderful friends. Thanks delta girls!!!! I miss yall more than you know!

smiling lily...

you want me to do what?

sweet Lily in her going home dress...

Sweet tiny monogrammed sweater hand made by my mother-in-law's friend and college roommate. This is the smallest sweater with the smallest buttons I have ever seen. Lily wore it home from the hospital. Thanks Mary!

Whoa...hold on Lily...These two are going to be trouble, I can just feel it...

Too sweet...Lily's tiny handmade smocked dress that she wore home from the hospital. Thanks Sara for sending it to us. It is the cutest thing ever!!!

Quick update

Sweet Thomas...kissing Lily

Too precious...can she stay this little forever?

Love the cheeks...

Lily, Mommy, and Thomas

Thomas holding Lily's hand...

Like father like son...reading the paper

So sorry it has been so long since I have updated. You would think now that we are all home I would have more time to update. WRONG! Lily has decided these past several nights that she would like to eat every 1 1/2-2 hrs during the night and sleep for 3hrs straight during the day. Go figure. So, I have been trying to go to bed as soon as she goes down for the night, which is the time that I would normally update. I will try to get better as we hope to get on some type of feeding schedule soon.

So this past Wednesday (Jan. 22) Lily was 4months old or as the doctor said 3 days old! Lily had her first doctor's appt. on this day after leaving the hospital. So confusing talking with the doctor about her age. I will try to explain that later. She is doing really well and is now over 6lbs!!!!! Developmentally she is where she should be which is great and according to her corrected age she is on the growth chart as well. Way to go Lily!

Thanks for continuing to pray for us during this special time. I have several things I would like to blog about so maybe sometime soon I will get the chance.

At home update...

Big Blue eyes...

Thomas wanting to play on Lily's mat...

Thomas dong tackle drills with daddy...

Lily taking her medicine like a big girl...

Lily having tummy time...

Daddy and his kiddos...

Daddy and Lily...

Check out my tongue...

We made it!!! It is so hard to believe that a week ago I was in total despair wondering if I was ever going to bring my baby home. And now I am able to hold her whenever I want and look into her precious blue eyes all the time. God is good even when we don't understand our circumstances, even when we feel so far away from Him, and even when we don't know what to ask or think of Him. He taught me that His timing is perfect and that He was right there with us where He had been every day.
I can'y begin to explain to you my emotions or thoughts these past several days that Lily has been at home. In some ways it was very emotional leaving the people who so diligently cared for our tiny miracle from day one, but on the other hand it was like leaving with a regular newborn. I am still shocked that I didn't have to pass a test before leaving with her, or sign my life away promising to be so careful with her. After the little bit of instructions I did get, I was like that's it, are you sure?
We have enjoyed so much having the whole family under one roof. It is so nice to be at home and not worry about getting to the hospital and getting Thomas taken care of. We were even able to have a relaxing Sunday playing outside with Thomas. Which we haven't had in 5 months!!
Thomas is adjusting pretty well. He has his really sweet moments wanting to kiss Lily. And then he has his moments where he tells me to put him down. Yes, he keeps referring to Lily as a he or him. Not sure where that came from. Tonight he said what I knew he was going to at some point. Lily was crying and I got up to get her and sat back down with Thomas. He looked at her and said, "want to go to hopital Lily?" And I asked Thomas, do you want Lily to go back to the hospital? And he said yes, to sleep. Too funny.
Lily has done really well with eating and sleeping at night. I was having to set my alarm during the night to make sure she woke up and ate enough. But she is waking up on her own about every 2 hours now to eat. She is having more episodes during the day where she is awake for long periods of time which is so fun to watch. It is so hard to believe that the same big blue eyes I am looking into today were the same eyes that were fused shut on her tiny body 4 months ago. Wow, God is good. And there is nothing He can't do. I think one of the biggest lessons I have been learning. Is to not put God in a box. Don't limit him. Don't be afraid to ask and always be prepared for what He has in store for you. He does listen and He is always faithful to answer, even if it isn't on our timing or the answer that we thought it should be. To God be the glory!!!

First day at home picture post...update to come soon

Lily after her first real bath...

Lily getting a bath for the first time...

Thomas wanting to swing too...Lily looks a little scared...

Thomas in Lily's seat...

Thomas wanted to show Lily his playroom...

Lily's first time in her new swing...

Precious Lily...

Loving her new swing...thanks PACU girls!

Coming Home picture post...

Loading up in the car...yea...go daddy go!

Thomas meeting Lily for the first time

Hi Lily...

where did Lily's sock go...

Thomas and Lily...

All packed up...

Going home outfit...

Final Count Down...

Praise God, we are going home!!!! In about 14 hours we will be heading out the door with our precious Lily!! Just one week shy of 4 months in the hospital. Yea...Lily and I have had a good couple of days. She is nursing very well especially for such a premature baby. She also took several large bottles today as well. She has passed her car seat challenge, developmental screening, hearing test, and everything else we have to do before they open up the gates! She had another eye exam today and everything remains the same without any problems or anything to worry about. The MRI also went well. Nothing major showing up, Praise God, only some immaturity with her brain, which is to be expected, and some areas that indicate a possible cognitive delay as she gets older. But all of this is to be expected in such a premature baby and she will begin early childhood intervention within a few weeks.

I can hardly believe we are actually leaving. I don't think I will completely be able to take a deep breath until we are out the door and loading up the car seat. Please pray that Lily and I have another good night, that Thomas will be prepared for tomorrow and have understanding, and that Lily will prosper in her new home!!!! I am so overwhelmed with so many emotions right now that I will have to express them later. Hope I can get some sleep...Thanks for all of your prayers, support, and encouragement. God is good!!

Keep the prayers coming...

So, the upper GI series went well. Everything looked good except that she has severe acid reflux. Which we already knew, so at least there wasn't anything else wrong. Thanks for your prayers. So for now, the plan is to tube feed her through the night to give her throat and esophagus a break. Tomorrow they are going to take her tube out and I am going to strictly breast feed her day and night and see how she does. If she does well and hopefully continues to gain weight then we should be on the road out the door very soon. They aren't going to worry about her bottle feeding so much if she will nurse well. She is also going to start the new medicine tonight so hopefully by tomorrow she will be feeling much better.

Tonight she is 5lb. 8.9oz. So thankfully through all of this she is still managing to gain a little weight each night.

Please pray more than ever that she will do very well tomorrow nursing and that she will gain weight. Pray that everything will fall into place and that we will once again be preparing for her to come home this week. And pray for Thomas to adjust well, to have understanding, and to feel loved. Thanks so much.

quick update...

First, let me say thank you to all of you have sent us comments letting us know you were praying and for your encouraging words. It helps so much to be reassured each day that there are indeed so many people praying for Lily. I am amazed at how many people we don't even know that are following Lily's progress and praying consistently for her. For all of you, I am especially grateful because you truly exemplify God's love and are living out His commandment to love your neighbor as your self.

So, today we have received some encouraging news. Because Lily always does better when she breast feeds, they are letting her strictly breast feed while I am here and letting her choose her own schedule instead of forcing her to eat at a certain time. So far she has done really well and doesn't seem to be in any pain when she nurses. She is also about to go for a upper GI series in radiology. This test will possibly show how the stomach is emptying or any blockage/structural problems. Please pray this goes well and helps us have a better idea of what is going on. Lily is also going to start a new medicine after the test called Reglan. This will help her empty her stomach quicker so that the food doesn't come back up as easy. There are some side effects from this med, so please pray that we don't experience those and that it helps her. We are still on a goal to get her out this week. Please continue to pray that this happens. Thank you, Thank you, Thank you!!!! More news to come later!!!!

Needing your prayers...

So tired...this is after trying to feed her.

Sleeping beauty...

Well, I wish I had good news to bring you but unfortunately things have gone from bad to worse. Lily continued to be able to eat less and less through the night so this morning they had to put her feeding tube back down. So of course when I arrived there this morning I was a little more than upset. I really don't know what to tell you. I am afraid to tell what I am really thinking in fear of being a stumbling block to what the Lord is doing. But I would be lying if I said I wasn't disappointed, mad, angry, frustrated, exhausted, and just worried. I don't know how much longer I can hold it together. Actually I can't. It is only by God's grace and strength that I am able to even keep going. I know this little setback may not seem like such a big deal, and yes it could always be worse, but when your baby has been in the hospital for almost 4 MONTHS, and when your two children have not even met, enough is enough!

Lily's neonatologist from level 3 came to see her today when she heard the bad news. She took the time to try and feed Lily herself and saw how bad it was. Yes this is a very special lady, who I will never forget. She made several suggestions at what is actually the problem, maybe not even acid reflux at all. But we will see what happens tomorrow. She was going to talk with Lily's current doctor and hopefully we will get to the bottom of this. I still am bold enough to say that I plan to bring her home this week barring any major complication!

Spiritually I am at a really hard place. Not sure really how to pray, think or act anymore. I know all of the right things to say and do, but honestly it is getting harder and harder to live them out. Maybe I was foolish enough to make my own plans to bring her home this week without really giving it to Him. I guess I just hoped that for once our timing would in fact be His timing. And maybe it still will be. I am going to remain hopeful as hard as it may be right now. I know that God knows the desires of my heart. I know He is going to continue to be with Lily. I know that He won't give me anything that I can't handle with Him at my side. So for now, I am going to continue trying to find ways to "praise Him through the storm." After all it is not about me.

Please pray tonight believing that tomorrow will bring answers and solutions to Lily's problems, that she will be able to eat without being in so much pain, that her BP will continue to get better, and that we will take her home very soon. Please pray that I will not grow weary but will lean solely on my God who has brought us this far. I thank God each night for all of you!

"I wait for the Lord, my soul does wait, and in His word do I hope.
My soul waits for the Lord More than the watchmen for the morning." Psalm 130: 5-6

Running out of patience...

Daddy trying to get Lily to eat...

Left side-lying as they call it...the position we have to put Lily in to eat.

Lily had her long awaited MRI of the brain this morning. Greg and I were both there to go with her. We were able to sit and watch her on a video monitor. I don't think either one of us were truly prepared for it. She did great, but seeing your infant baby in a huge MRI machine was very difficult to watch. There were moments that it took everything in me to not lose it emotionally. Needless to say, I am glad it is over. Thanks to all of you for praying for this today and for your calls, emails, and texts throughout the day. We hope to hear some news Tuesday or Wednesday.

Lily's acid reflux is acting up really badly again. It is horrible to try to feed her. She has barely been eating her minimum requirement. Her doctor changed her medicine to Prevacid today so we are praying that this helps immediately. This has been so stressful for me. I feel like I am torturing her to eat but at the same moment I want her to eat so we can get the heck out of there. I have really struggled with anxiety this week. I keep trying to remind myself that we have been here before and that God has been faithful to bring us through it. We are sooooo close to going home that the thought of it being pushed back even more, is unbearable. However, as tired as I am, with very little patience or understanding, I am going to trust in our Lord knowing and believing that He has Lily in His hands and that once again His timing is not mine.

Please pray that her reflux will get better. That she will be able to eat well and that her blood pressure meds will start working and lower her blood pressure. I also ask that you pray for us to have patience, trusting, and that we will yet again learn how to praise Him through this small storm. Thanks so much for all you do for us!!

Cute feet...

Thomas and Mommy time at Chick-fil-A

Peek a boo

Precious socked feet...Thanks Mimi for the cute socks!

We are beginning the count down to when we can take Lily home. We are hoping it will be sometime next week. Lily needs to continue to eat well and gain weight and they have to get her blood pressure medicine worked out. Her blood pressure was high again today, but we are hoping that it will just take a little bit to start working. There are so many things that have to be done before she can go home. I would ask that you pray that it all goes well and quickly and that there is no wasted time. I don't have the patience left for that. Lily will have her MRI of the brain early Friday morning so please continue to pray that this goes well and that we get normal results. Greg and I will be able to go with her and watch it all take place. She is weighing 5lb. 8oz tonight. Such a big girl. She is trying to tell them she is ready to go!!

Thomas gets really excited when we tell him that Lily is coming home soon. His excitement may die down when he realizes what is about to happen!! He is at such a funny and trying age. I have to tell you a few funny phrases he has said lately so bare with me. Sunday night we had dinner with some friends from church. They have a little boy who just turned 2 and the dad was helping them down the stairs. He told his son to show Thomas how to go down the stairs. Thomas responded with"I'm too old for this." Where he learned that, who knows. My other favorite this week was when I asked him if he needed to go potty and he so casually says, "no, I'm good mom." Tonight I took him to chick-fil-a for dinner and broke down and got us a milk shake to share. On the way home he was drinking it and said "this is yummy mommy, I have to say thank you." And I said who are you going to thank, thinking he would say me since I gave it to him, but he said, "chick-fil-a." There are so many I can't even remember them all. I wish I had a tape recorder going all the time.

Tonight I would ask that you pray for Lily to do well with her bottles. She started showing signs again of her reflux acting up, so I of course am trying not to worry about it. Also please pray for her blood pressure to go down. Thanks for your prayers for my friend's baby. So far he is doing well off of the ventilator, praise God! Have a good night and we hope to continue to give you good news!