DAY ONE HUNDRED FIFTY-FIVE

My bottles went well over night, but today I have been really tired. Mom and Dad have been with me all weekend and it has been so nice! Mom and Dad were able to go home and check on my dogs, so Mom called to check on me at 4:00 p.m. and the nurse said that I had finished my entire bottle, maybe I am getting my second wind or maybe I still have my days and nights confused. I know one thing that I am not confused about and that is being at home with Mom and Dad. When the doctor tells me I can go home my bags will be packed immediately, but Mom and Dad will have to check and make sure that I packed everything when they come to pick me up! The doctor has not set a "going home" date yet, but Mom and Dad will have to stay with me at the hospital again to practice with my accessories that I need when I go home. I am going to come home on oxygen, I will come home with a nebulizer, for breathing treatments every twelve hours and I will also sleep in my crib with a wedge that has a sling on it that keeps me on an incline which helps with my reflux. Please continue to pray for me that I will be able to go home soon.

DAY ONE HUNDRED FIFTY-FOUR

Dad feed me at 6:00 a.m. and then drove home to take care of my dogs and Mom fed me at 9:00 a.m. and I took all 80ccs. I am suppose to take 70ccs every three hours and I have been able to do that, but I guess I was super hungry that time. The doctor must be really getting me ready to go home because she turned down my oxygen to .1 liters and I am on 100% oxygen and doing well. The bottles at 12 p.m. and 3 p.m. were tough and I was unable to take all of my milk, but I am going to blame that on the changes to my oxygen, yeah, that sounds good, at least for now.

DAY ONE HUNDRED FIFTY-THREE

Mom and Dad were here and they were here all day and all night. Every time I woke up they were with me! I was able to take all my of my bottles, and I only spit up twice, it was quite a show and I got to change my clothes both times! Mom and Dad even took turns getting up with me, it was so nice to see them through the night, they usually call and check on me but now they knew how I was doing because they were there. It was an awesome day and God is good.

DAY ONE HUNDRED FIFTY-TWO

Mom came to visit today and reminded me that she and Dad were staying with me all day tomorrow and spending the night! I continue to finish my bottles and I am super excited about Mom and Dad staying tomorrow, I am even going to be on my best behavior!

DAY ONE HUNDRED FIFTY-ONE

I am back on a four hour feeding schedule, I started at 5 p.m. last night and I did well overnight, at each bottle I was able to take just a little bit more. At my 9:00 a.m. bottle today I was able to take all 90ccs with no problem. The feeding therapist gave me my bottle at 1:00 p.m. and I took 70ccs. then with Mom at 5:00 p.m. I took 65ccs and at 9:00 p.m. I took all 90ccs. Yeah me! I think Mom, Dad and I are going to have a blast this weekend hanging out!

DAY ONE HUNDRED AND FIFTY

The doctor and nurses are still going back and forth on how often I get my bottles so they decided that Mom and Dad will stay with me at the hospital Friday and Saturday. If all goes well there is even talk of me going home soon. Mom and I have talked about it and she thinks I do a better job on my bottles when I get some extra sleep so when they stay with me that will be my schedule, a bottle every four hours. The nurse also told Mom and Dad that how I do this weekend will be the final determination on whether or not I get a g-tube. Please continue to pray for God's will to be done.

DAY ONE HUNDRED FORTY-NINE

I took 80ccs today from one of my bottles, and that was after one of my four hour naps. I am making progress, but I think the nurses and doctor are still trying to figure out what is best for me, either a bottle every three hours or a bottle every four hours. It does get confusing though, if I take 70ccs then I have to take a bottle every three hours, but then I get tired easily and if I take a bottle every four hours then I need to take 90ccs which seems almost impossible without practice. One day soon I will check this off the "to do list" and go home.

DAY ONE HUNDRED FORTY-EIGHT

I was moved to the step down nursery! I continue to work on my bottles and I was able to stay on .2 liters of air. I weigh 9 pounds, 11 ounces and the doctor decided to move my bottles to every four hours. My feedings were moved to every four hours so that I could get longer naps since I am an old soul I am awake more during the day. because the doctor moved my feeds, I take only six bottles a day instead of eight, that means that I must increase the volume in each bottle from 70ccs to 90ccs, that is 3 ounces per bottle for a total of 18 ounces per day. WOW, I hope that I can do this!

DAY ONE HUNDRED FORTY-SEVEN

What? Who? When? Where and Why? The doctor turned my air down to .2 liters. I can go home on .1 liters so I am making progress! I did well on all of my bottles, the nurse only needed to give me 5ccs from two of my bottles through my feeding tube. I wonder what I will be able to do tomorrow?

DAY ONE HUNDRED FORTY-SIX

I know I look out of sorts in this picture, but I had a good day, it was really a plateau day, but those are good days. I was able to complete six of my bottles and the feeding therapist figured out that I needed more thickener in my milk. As you know the thickener helps with my reflux and the feeding therapist increased it from 8.5ccs to 9ccs. Hopefully this helps me feel better and helps me continue to do well on my bottles.

DAY ONE HUNDRED FORTY-FIVE

I was able to complete 50ccs of each bottle! Have you noticed a theme lately with my pictures? I love napping with Mom and Dad. I know I am making progress on my bottles, but sometimes it seems like I cannot get over this "hump" and go home. Please pray that God's will be done and that He continues to hold me in his hands.

DAY ONE HUNDRED FORTY-FOUR

Despite this picture I was wide awake today and Mom and I read books together. I was able to complete every other bottle and I weigh 9 pounds and 11 ounces. Today was a plateau day and I am happy with that. Please continue to pray for my continued progress and thank you for your love and support.

DAY ONE HUNDRED FORTY-THREE

GUESS WHAT? The eye doctor said my eyes are developing normally and he does not want to see me again for one year! Guess what else? I took all six of my bottles, yes you read correctly, I was able to finish all six bottles which had 70ccs in each bottle. I am the MAN, at least that is what Mom and Dad said. The doctor did not even have to give me the other reflux medicine that he discussed with Mom and Dad yesterday, I know I should not eavesdrop, but I decided to get my act together and show everyone that I can do anything I set my mind to! Today was an awesome day and God is good!

DAY ONE HUNDRED FORTY-TWO

OK, OK some of my onesies are now officially t-shirts. Mom and Dad brought up new clothes for me and the doctor discussed the plan for the rest of my stay in the NICU. I have really bad reflux and have had it for as long as I can remember. I currently take Previcid but the doctor talked about adding another reflux medicine. The doctor lowered my liters of air to .5 and I am still on room air. I now have 6 opportunities to take a bottle and I have to be able to take 8 before I can go home. The doctor says that I will more than likely go home without oxygen and not need a G-tube. I have an eye doctor appointment tomorrow please pray that the good news continues!

DAY ONE HUNDRED FORTY-ONE

Hello out there! The doctor has decided that adding thickener to my milk works well and I will get the opportunity for a bottle every three hours if I am awake and interested. Mom and Dad both got to feed me today and I am consistently finishing 50ccs out of 70ccs. I will tell you though that I threw up on Dad a little, just a little when he was feeding me this evening. I have lost some weight due to the surgery, but I weigh 9 pounds and 5 ounces. There is no talk of a release date for me just yet, as you know I continue to work on taking all of my bottles and the doctor wants to wean me off of my oxygen before I go home. It would be fantastic if I could go home with no accessories! Thank you for your continued thoughts and prayers and thank you for watching out for Mom and Dad as we continue on this journey.

DAY ONE HUNDRED FORTY

I continue to make progress on my bottles. I was able to take an entire bottle at 5:00 p.m. The doctor and feeding therapist are adding thickener to my milk to help me with reflux. Dad and I got to snuggle today and I got cold so Dad wrapped me in a blanket and used his beard as an impromptu hat. I got my 4 month shots today and the doctor talked to Mom and Dad about me going home without oxygen, would that not be awesome! Please continue your prayers that I may continue to make progress on taking all my bottles and that the doctor is able to wean me off of my oxygen so that i can go home.

DAY ONE HUNDRED THIRTY-NINE

Today was a big day! Overnight I was able to take 50ccs and 45ccs from each of my bottles. At 11:00 a.m. I took 45ccs and then at 2:00 p.m. Mom brought my bottles from home so that I could pick the one I want to use. My feeding therapist added a thickener to my milk to help me with my reflux and I was able to complete my new bottle at 2:00 p.m. The doctor now says that I can have a bottle any time I am awake and interested. I have talked with Mom and Dad and there are two things that I continue to work on; my bottle feedings and my oxygen needs. Please continue to pray that I can go home soon, I am making progress! God is so good!

DAY ONE HUNDRED THIRTY-EIGHT

I keep making progress on my bottles, I finished two bottles last night that had over an ounce each! The plan is to have me back on full feeds by this evening and the IV that is in my head should come out soon and since I am still on room air the doctor will wean my liters. At 11:00 a.m. today I had a breathing treatment and got suctioned out. Because the breathing treatment sapped my energy I was only able to take 10ccs at my 11:00 a.m. feeding. At 5:00 p.m. I was able to take 30ccs from a bottle. This is not a step backward it is more like a sashay sideways. Thank you for the continued prayers.

DAY ONE HUNDRED THIRTY-SEVEN

Well I feel MUCH better! Do not be afraid of the IV, it will get taken out in the morning. I had my surgery yesterday and it was a success! I got to eat today starting at 2:00 p.m. through my nasal tube and I took a bottle at 5:00 p.m. I was only given 20ccs at each feeding but I finished both, even the bottle! Guess what, I was still hungry but the doctor said I had to wait until later to get more milk. My doctor said that the plan is to gradually increase my milk back to the volume it was before the surgery and work on taking all four bottles. When I can take my first four bottles I will then get to work on taking the remaining four. I am on the right track, I feel good and guess what else, I am on room air, that means that my oxygen is 21% which is what you breath everyday. The doctor talked about turning down my oxygen and getting me ready to go home. So after this wild roller coaster ride I am now working on taking all eight bottles and lowering my oxygen needs. Mom and Dad are really excited and cannot wait for me to come home. Thank you for all the prayers during my surgery, God answers prayers and I am on my way home!

DAY ONE HUNDRED THIRTY-SIX

***DISCLAIMER***

The following entry is written by Maxwell's Mom because he is under anesthesia due to surgery.

***DISCLAIMER***

After a few reschedules the surgery finally happened today, Tuesday, August 10, 2010. The anesthesiologist and surgeon spoke with Ben and I before the surgery and told us how handsome he was, of course and reviewed the procedure. Maxwell was escorted down to the operating room at 9:45 a.m. and came back to the NICU at 11:45 a.m. The doctor had warned us that Maxwell's hernias were very large and he may be able to repair only one at a time, but when he came to talk to us after the surgery he said that he was able to repair both hernias. Maxwell spent the rest of the day recovering from surgery. The plan for the next couple of days is to get him off of the respirator and then resume bottle feedings with the hope that once the hernias are repaired he will be able to finish more of the bottle and come home. Thank you for your continued prayers and well wishes.

DAY ONE HUNDRED THIRTY-FIVE

Remember how I said that I worked really hard yesterday? Today I am really tired! My surgery is still on for tomorrow so I am going to relax for the rest of the day. Thank you for your thoughts and prayers!

DAY ONE HUNDRED THIRTY-FOUR

Today was another great day! I got to spend some more time with Dad and I knew my nurse from the hospital in Lewisville. I am getting better on my bottles, on my first one I was able to finish the whole thing and I took all but 10ccs from my second one. I continued doing well on my bottles over night, at 11 p.m. I finished the entire bottle and at 5 a.m. I took 58 out of 78ccs. I worked really hard today and I am so excited. Thank you for your continued prayers.

DAY ONE HUNDRED THIRTY-THREE

Mom and Dad remembered my mobile! I spent most of the day relaxing and a you can see, Dad and I are two peas in a pod. The doctor increased my milk to 78ccs, that is almost 21 ounces of milk per day! I continue to practice my bottles and I weigh 9 pounds and 5 ounces. Today was a great day!

DAY ONE HUNDRED THRITY-TWO

Today is a plateau day. I charmed my way out of the warmer and into a crib, "ahhhhhh", home sweet hospital! The surgery is still scheduled for Tuesday so my plan is to take it easy and relax until then. Mom and Dad were as happy as I was that I am in a crib and they promised to bring my mobile up to the hospital so that I would have something to look at. Thank you for your continued support, we are at the end of our ride and I would love for you to keep up with me until I go home.

DAY ONE HUNDRED THRITY-ONE

Well my surgery got pushed later and later and then got rescheduled for Tuesday August 10 at 9:30 a.m. Just another dip in the roller coaster right? The rest of my day went well, the occupational therapist made a new splint for my foot and I continue to work on my bottles. I now weigh 9 pounds and 3 ounces. Please continue to pray for my surgery and getting to go home soon.

DAY ONE HUNDRED THIRTY

Same song, different verse, I really like napping with Mom! The surgeon came by today just to visit with me, look at my hernias and he said he could do the surgery tomorrow at 2:00 p.m. I continue to do well on my bottles, on the first two bottles I took 40ccs and 38ccs. On the two bottles overnight I was able to complete the entire bottle at 11:00 p.m. and finished 40ccs at 5:00 a.m. Please pray for a successful surgery.

DAY ONE HUNDRED TWENTY-NINE

This is how I spent most of my day, snuggling with Mom. I am still working on taking an entire bottle and when the doctor came by to visit with me today he said that he wants to do the hernia surgeries and see if that helps me with being able to take more food. The doctor said that he would contact the surgeon on Thursday and get me on the schedule so this could happen by the end of this week or early next week. After I recover from the hernia surgery the doctor wants to give me a week to see if my feedings continue to improve, if they do not then I will have another surgery to put a G-tube in so that I can go home with Mom and Dad. I think I am ready either way, I would like to spend all day snuggling with Mom and Dad, not just when they are able to come visit. The doctor does not think that I will need the G-tube for more than six to eight months. As the doctors have said before there is nothing neurologically or physically wrong, my lungs just need time to grow and mature. The G-tube will allow Mom and Dad to give me a bottle at every feeding and anything I do not finish goes in the tube. Before Mom and Dad left for the evening the nurse told them that I had made the 9 pound mark, can you believe it? I do not look like a micro-preemie anymore. Please continue to pray that God continues to work in my life, as well as, Mom and Dad's lives. Mom, Dad and I are thankful everyday for our wonderful friends and family.

DAY ONE HUNDRED TWENTY-EIGHT

The first picture is of me being wheeled away for my tummy test and the second picture is of me back with Mom and Dad after my tummy test. Did you know that I had to drink a funny fluid that made my tummy glow so that the doctor could see it on x-rays? Mom kept calling tonight hoping to get results and she finally did and everything in my tummy is OK! Because of all the activity today on my first bottle I took 40ccs and then at my second opportunity I only took 12ccs because my tummy was already full of that funny drink. Then on my third attempt I took 35ccs and on my fourth and final attempt I took 35ccs. I hope I do not feel as tired tomorrow, I really worked hard today! God is good and he answers prayer.

DAY ONE HUNDRED TWENTY-SEVEN

Guess what! I weigh 8 pounds, 12 ounces and I was able to finish one whole bottle! The doctor increased my milk to 70ccs which is over two ounces, but just shy of 2 1/2 ounces and I was able to finish the whole thing. The doctor also decreased my O2 liters down to 1.0 and Mom was excited about that and told the doctor that I had been down as low as .25. The doctor also decreased the calories in my milk from 26 to 24 and I have been able to have BIG poopie diapers without help! Progress is being made, so much so that when the doctor spoke with Mom today she wanted to give me a couple of more days on the bottle, so still no date for the surgery. What the doctor did schedule for Monday is a dye test of my GI tract. The doctor and nurses just want to make sure that there are no blockages and that everything moves and goes the way it is suppose to. The doctor explained that this is just a preliminary step before surgery and there is no indication of a problem. God is so good! Mom and Dad send of prayers of thanksgiving daily and are so happy that we have family and friends that do the same.

DAY ONE HUNDRED TWENTY-SIX

Here I am with my man monkey, we were both really tired so we decided to snuggle up and take a nap. I have been working really hard today to reach the goal the doctor set for me and I have been able to increase the amount of milk I take from my bottles. It is just a little bit more every time and sometimes I am really tired and do not do as well, but I just remember that I can only take baby steps and Mom and Dad are happy as long as I try my best. Have a wonderful day and I will talk to you tomorrow.

DAY ONE HUNDRD TWENTY-FIVE

Here is a recent picture of Mom, Dad and me taken on Friday in Plano. Today was a plateau day, but the doctor did come by and talk to Mom. The doctor said that she would know more by Monday about the upcoming surgery and that the goal is for me to increase the amount of milk I take from the bottle. The surgery has not been scheduled yet, but she needs to know whether or not to give me a G-tube. Please pray that I meet the goals set for me this weekend!