Maxwell

DAY ONE HUNDRED SIXTY-EIGHT

2010-09-12T04:34:00.001-07:00

I continue to press on, by the end of the day I was taking an entire ounce of milk from my bottle and an additional 10ccs through my tube. Even though I probably could have taken the entire 40ccs from the bottle the doctor wants to pace me and make sure that I enjoy taking a bottle so the 10ccs through the tube are given to me right after I finish my bottle and it does not have any thickener or added calories. The doctor did add additional calories to the milk in my bottle along with the thickener, have I told you I love milkshakes? As you can see by the picture I have clothes on again today, which Mom loved, so today has been a red letter day and I really am on my way home.

DAY ONE HUNDRED SIXTY-SEVEN

2010-09-12T04:21:00.001-07:00

I got to eat real food from a bottle! Milk is still the best thing I have ever tasted! Because of my throat I still prefer my milk thick so the feeding therapist said I could have my milkshakes back. For today the doctor just wanted me have thickened milk, 20ccs at a time, tomorrow he will add additional calories and increase the amount of milk I can have at each feeding. The doctor is slowly reintroducing milk because he does not want me to pop any stitches and he wants me to really enjoy eating! I do not need pain medication anymore, if I do hurt I can have Tylenol and I still cannot tell you what hurts worse, but honestly it may be the circumcision! I am still on the mend but today was a great day!

DAY ONE HUNDRED SIXTY-SIX

2010-09-09T12:24:00.000-07:00

Hi, Maxwell here! I was able to come off the ventilator last night and I still hurt from the surgery, but I am on the mend! For dinner I got Pedialite through my tube, it was not a full feed but it took the edge off. I get pain medicine when I need it and let me tell you, I do not know what hurts the most so I will just say OWWW! Mom and Dad said that the doctor fixed my throat so I will not reflux anymore, but they did warn me that my throat will hurt for awhile. Thank you for the prayers during my surgery, God is good and continues to hold me in his hands.

DAY ONE HUNDRED SIXTY-FIVE

2010-09-08T14:47:00.001-07:00

Hello to Maxwell's family and friends! The surgery went well today and Maxwell is resting comfortably. The doctor reports that he will take Maxwell off the ventilator overnight and if things go well he can take milk tomorrow. The doctor explained that feedings will be done through the tube at first to make sure that everything is healing properly and works as it is suppose to. The surgery consisted of the g-tube, the Nissin procedure to stop his reflux and the doctor also circumcised Maxwell and reported that the hernia repairs that he did about a month ago look good. Ben and I cannot thank you enough for the wonderful comments, generous support and unconditional love that we have received as a family. Maxwell is such a blessing to Ben and I and we could not be more pleased with the progress that he has made. We know that is due to God answering a multitude of prayer and as parents we cannot wait to see how this journey plays out, with God's help it will be amazing!

DAY ONE HUNDRED SIXTY-FOUR

2010-09-08T14:33:00.001-07:00

Mom and Dad brought my Bumbo seat from home and let me try it out today. I like the tray and the toy that comes with it. I think I sit up quite nicely, but I got sleepy while I was sitting there and Dad took a video of me sleeping in my Bumbo and put it on Facebook. The nurses let me rest up for my surgery tomorrow and gave me all my milk through my tube, so it was nice to be awake when Mom and Dad came to visit. Mom asked the nurses about my weight before surgery and I weigh 10 pounds and 13 ounces. I am not nervous about tomorrow's surgery because Mom and Dad say that I will not remember it and they also said that I will feel better because the doctor is going to fix my reflux. Mom and Dad also told me that everyone, family, friends and even people they have never met are praying that things go well. Thank you for the support and Mom will write for me tomorrow.

DAY ONE HUNDRED SIXTY-THREE

2010-09-08T14:28:00.001-07:00

This is Mom's favorite family picture, for now! The nurses all think that I look just like Dad so they thought that I needed a faux-hawk and a goatee. What do you think? The surgery is still on for Wednesday and while we wait Mom and Dad and I are just having fun and making memories. Thank you for your continued prayer and support.

DAY ONE HUNDRED SIXTY-TWO

2010-09-06T04:28:00.000-07:00

Mom and Dad came by today after church and it was another plateau day. Mom read a few books, while Dad and I listened, OK, I slept and Dad listened. They brought my bathtub from home because the nurse told them that I had outgrown the one at the hospital. I got to take a lesuirely bath this evening and it was nice! Did you know my tub is a spa tub, it has bubbles and a fancy shower head!

DAY ONE HUNDRED SIXTY-ONE

2010-09-06T04:25:00.000-07:00

Today was a plateau day. Now that the surgery is scheduled I am just waiting for it to be Wednesday. Mom and Dad came to spend time with me and we had a blast! For a change of scene they took me for a wagon ride around the NICU.

DAY ONE HUNDRED SIXTY

2010-09-03T07:12:00.001-07:00

I am twenty three weeks old today, but you probably already know that because Mom told me Dad posted it on Facebook. The feeding therapist tried something different today, she knows I consistently take 50ccs at each feeding so she moved my bottles to every two hours and expected me to take 50ccs each time. I was able to do that for awhile but then I got tired and overnight they moved back to giving me bottles every three hours. The doctor told Mom that the surgery has been scheduled for Wednesday, but no one knows the time yet.

DAY ONE HUNDRED FIFTY-NINE

2010-09-03T06:54:00.000-07:00

OK, do not laugh! this is the pre-consult before the doctor consults with me to set the surgery date. They made me drink more barium so they could put a scope down my throat and look at my upper GI. After the radiologist was done the feeding therapist completed a swallow study and no problems were noted with with either test. In fact the feeding therapist was able to reduce the amount of thickener she puts in my bottles. if you cannot tell from this picture I weigh 10 pounds and 3 ounces.

DAY ONE HUNDRED FIFTY-EIGHT

2010-09-03T06:41:00.000-07:00

The doctor, social worker, and feeding therapist came to talk to Mom and Dad tonight. I have not gained weight in the past week and I am already on the most calories I can get and I am getting the minimum amount of volume needed to remain hydrated. It was a very hard decision, Dad got quiet and Mom cried, but they decided to consent to another surgery to give me a feeding tube in my tummy. This does not mean that I stop bottle feeding it just means that what I do not finish goes in the tube and I get to go home soon. I am ready to get on the floor and play and relax. It is getting harder to be in the hospital and maintain such a rigorous schedule that I cannot seem to meet no matter how hard I try. The tube will not have to be in forever, just until my lungs catch up with the rest of my body. Along with the tube the doctor will also fix my reflux problem so I believe Mom and Dad have made the right decision, I am ready to feel better and not fight to do something I love which is eat!

DAY ONE HUNDRED FIFTY-SEVEN

2010-09-01T03:47:00.001-07:00

Today was another plateau day. The only things that happened were I got a bath and the feeding tube had to go back in my nose. I promise I tried very hard to finish all of my bottles, but I could not. I was very close, but I got tired. Mom came to visit me and I was able to finish my bottle then and we talked about always trying my best. Mom and Dad are always proud of me as long as I am trying my best and they know that I can finish my bottles, but they also reminded me that my lungs are still growing and the only thing I can do is take my time and continue to grow big and strong. Speaking of growing, I continue to gain weight and I now weigh 10 pounds and 1 ounce.

DAY ONE HUNDRED FIFTY-SIX

2010-09-01T03:19:00.001-07:00

Today was a plateau day. Toward the end of the day when Mom and Dad were there the doctor said that the nurse could take my feeding tube out of my nose. The doctor has still not given us a date for going home, but continues to say it is close. Thank you for your continued prayers and support.

DAY ONE HUNDRED FIFTY-FIVE

2010-08-29T12:44:00.000-07:00

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

2010-08-28T09:25:00.000-07:00

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

2010-08-28T09:18:00.000-07:00

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

2010-08-28T08:43:00.000-07:00

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

2010-08-25T08:25:00.000-07:00

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

2010-08-25T08:17:00.000-07:00

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

2010-08-25T07:24:00.001-07:00

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

2010-08-25T06:20:00.001-07:00

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

2010-08-25T06:11:00.001-07:00

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

2010-08-25T05:55:00.001-07:00

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

2010-08-25T05:39:00.000-07:00

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

2010-08-25T05:31:00.001-07:00

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

2010-08-17T17:55:00.001-07:00

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

2010-08-17T17:42:00.000-07:00

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

2010-08-15T20:21:00.001-07:00

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

2010-08-14T08:25:00.000-07:00

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

2010-08-14T08:14:00.001-07:00

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

2010-08-14T07:52:00.000-07:00

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

2010-08-11T18:03:00.000-07:00

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

2010-08-11T17:27:00.000-07:00

***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

2010-08-09T17:35:00.001-07:00

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

2010-08-09T17:27:00.001-07:00

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

2010-08-09T17:17:00.001-07:00

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

2010-08-09T17:09:00.001-07:00

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

2010-08-09T17:02:00.001-07:00

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

2010-08-05T09:25:00.000-07:00

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

2010-08-04T10:06:00.001-07:00

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

2010-08-03T06:31:00.001-07:00

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

2010-08-02T07:00:00.001-07:00

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

2010-08-02T06:44:00.001-07:00

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

2010-08-02T06:32:00.000-07:00

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!

DAY ONE HUNDRED TWENTY-FOUR

2010-07-29T22:52:00.000-07:00

Yes, I know I am to old to be seen without clothes, but the nurses and the ENT doctor needed to assess me during my consult this afternoon. As you know I wheeze and the doctors in Lewisville knew it was being caused by either my lungs or my throat. The last x-ray done on my lungs showed improvement so when I transferred to Plano they requested that an ENT doctor look at my throat. The procedure itself felt like it took forever and I tried to tell the nurses that I wanted it to stop, but the doctor kept looking down my nose until he saw everything there was to see. First of all he sprayed something up my nose which I tried to get rid of, but just ended up making snot bubbles and then he put a wand up my nose that had a bright light on the end and that did not feel good! The ENT doctor look at my vocal cords and esophagus. He told Mom that he believed my wheezing was caused by a nicked vocal cord that happened during my heart surgery and a weak epiglottis, both of which should get better with time. The bottom line is I do not need surgery for my throat and the issues with my throat are related to my feeding difficulties, but there is no quick fix, I just need time to grow and get stronger. Please continue to pray for me on this journey, pray specifically for my feeding issues and please do not forget to say a prayer of thanksgiving, we keep asking and God continues to bless.

DAY ONE HUNDRED TWENTY-THREE

2010-07-28T19:23:00.000-07:00

Well I made the trip safely! When the transport team came to get me I was dressed to the nines and they laughed because they have never transported a baby who had clothes on before. The ride was really smooth and Dad rode with me while Mom followed close behind, I waved to her, but I guess she did not see me and then I decided to take a nap. When we got to the new NICU Mom and Dad watched while the nurses got me settled and they weighed me and I gained 2 ounces, I now weigh 8 pounds and 6 ounces. I have been very tired again today, I have had a big day, so I spent the remainder of the day resting and talking to my man monkey. The consults start tomorrow and I will keep you posted on the care plan.

DAY ONE HUNDRED TWENTY-TWO

2010-07-28T04:38:00.000-07:00

Well, tomorrow, July 28, will be my last day at MCL NICU. The doctor told Mom and Dad that I will be transported to another NICU to take care of the surgery and consults that need to be done before I can go home. Mom tried to talk to me about the move, not to be worried or scared and that Dad would ride with me, but honestly I was very sleepy today and was really only half listening. I continue to gain weight I am now 8 pounds, 4 ounces and I am still working on taking a bottle four times a day, but like I said I was really tired! Please pray for me tomorrow, that I make it safely to my next hospital and pray that I get to go home quickly and that all will go well. Mom told one of the nurses that this move is just the next dip in the ride that is the NICU roller coaster.

DAY ONE HUNDRED TWENTY-ONE

2010-07-26T21:24:00.001-07:00

Mom told me that today is my birthday, is it just me or do I have a lot of birthdays? Yes, that is right I am four months old today and I celebrated by finishing both of the bottles I was given today! Mom and Dad had their care conference with the doctor and the plan is to move me to the other hospital on Wednesday or Thursday, when I know for sure I will let you know. The doctor discussed why I need to go to the other hospital, he said so that other doctors could look at my foot, throat and hernias, the doctors want me to be in tip, top shape when I go home. Mom, Dad and the nurses are sad that I am leaving, but they know it is for the best and Mom promised me that we would come visit the NICU as soon as we could. When Mom called to check on me tonight the nurse told her that I officially broke the 8 pound mark, I think that is the third time in a week so hopefully I continue gaining weight and not just maintaining. My weight is 8 pounds, 1.8 ounces and my length is 18 1/2 inches. Please pray for a safe trip when I go the new hospital, Dad is going to ride with me but I am still nervous, I have only ever been in the NICU and I do not know if they will like me!

DAY ONE HUNDRED-TWENTY

2010-07-26T06:00:00.000-07:00

This was me pretty much all day today, I only got to practice with one bottle during the day and that was at 5:00 p.m. and guess what, I took the entire bottle! Yes, that is right drank all 67ccs from a bottle and I was still hungry but no one wanted to push it. I wonder if I can make a repeat performance at next two feedings? The doctor wants to meet with Mom and Dad tomorrow, instead of on Wednesday, so that may mean we make the move to the next hospital this week, I will definitely keep you posted! Please continue to pray and I promise to try my best to keep getting big and strong!

DAY ONE HUNDRED-NINETEEN

2010-07-26T05:39:00.000-07:00

Today was a plateau day, but I continue to make progress. For the past couple of nights, if I lay on my tummy I am on room air which is 21% O2 and that is exactly what you need everyday! During the day my O2 levels are anywhere from 25-28%. I guess I am getting to be a big boy now, can you believe I will be 4 months old in two days?

DAY ONE HUNDRED-EIGHTEEN

2010-07-26T05:28:00.001-07:00

Here I am practicing another bottle! I know that seems like all I do these days, but that means I am close to going home. I took 40ccs, 25ccs and 60ccs from each of my bottles, one day soon I promise to take an entire feeding from a bottle. My steroids have started and ended today so only time will tell if I can keep doing well on my bottles. The doctor feels relatively sure that we have found the cause for my wheezing and possibly the cause for my trouble feeding. Inflammation, scar tissue and acid reflux are horrible things and they hurt, but they can be fixed. Thank you for sticking with me on this long journey, it is not quite over yet, but I am glad you are here!

DAY ONE HUNDRED-SEVENTEEN

2010-07-26T05:17:00.001-07:00

Here I am practicing with another bottle! I can now have three a day and today I took, 22ccs, 39ccs and 50ccs from each bottle, I am getting better at doing more than one thing at a time! The doctor made some changes today, first of all he increased my milk again to 67ccs and then he stopped my steroids because my blood pressure was high. He wants to give me my final two doses, but he wants them to be smaller, this will probably start tomorrow, he wants to give me time for my blood pressure to go back to normal. Please say a prayer of thanksgiving because God has certainly gotten me through a tough week and He continues to care for me.

DAY ONE HUNDRED-SIXTEEN

2010-07-26T04:25:00.000-07:00

Mom and Dad had a care conference with the doctor today and it went well. Everyone is pleased with my progress so far and the steroids are working because I was able to take more milk from a bottle. The doctor said that because things are going well I can have three bottles a day! I will tell you though that I had a horrible tummy ache this afternoon, going from 24 to 26 calories is really hard! Maybe tomorrow I will feel better and drink an entire bottle.

DAY ONE HUNDRED-FIFTEEN

2010-07-26T04:14:00.001-07:00

Here I am in my swing again, I love this thing and Mom and Dad have already told me I have one at home. The doctor made some slight changes to my care today, he increased my milk to 64ccs and he increased the amount of calories in my milk from 24 to 26. He increased my calories because I have not been gaining weight, I have just been able to maintain. Up until now I have gained about an ounce a day, but right now I am teetering on the 8 pound mark and cannot seem to break it, one day I weigh 8 pounds the next day I weigh 7 pounds, 15 ounces. Mom tells me that the doctor wants me to weigh 30 pounds before I go home so I better get to bulking up, I think she was kidding, but sometimes it is hard to tell!! Hey guess what, the steroids must be working because I took 30ccs and 44ccs from a bottle today! Mom and Dad are glad that I am eating more, that means that when we get to the next hospital in Plano, they can look at mt throat and make a plan and maybe, just maybe I will not need a button in my tummy.

DAY ONE HUNDRED-FOURTEEN

2010-07-26T03:52:00.001-07:00

Well the echo results for my heart came back, I am fine and my heart looks good! Now that the doctor has ruled out my heart and lungs as the cause of my wheezing, he thinks that there is inflammation and scar tissue in my throat caused by being on a ventilator for so long, as well as my acid reflux. The plan is for me to take six doses of steroids over three days and see if that helps. I have hit a plateau on my bottle feedings so maybe treating the inflammation will help, the doctor says we may not see results until after the third dose. Be sure to come back and check on my progress!

ONE HUNDRED-THIRTEEN

2010-07-26T03:43:00.000-07:00

Today was rough, I am still wheezing from time to time so the doctor turned my liters of air up again to 1.5. He took a picture of my lungs and said that compared to the one taken three weeks ago, they actually look like lungs! Yeah Me, maybe I am a big boy! He did notice my heart in my lung x-ray and thought it looked enlarged so he has ordered an echo to be done tomorrow. The doctor did say that he did not believe that my wheezing was related to my lungs, but he is concerned by my heart and will have more information for Mom and Dad tomorrow. Please pray.

ONE HUNDRED-TWELVE

2010-07-26T03:33:00.000-07:00

Look at me and Dad, two peas in a pod! Remember I was telling you about my wheezing, well the doctor turned my liters of air back up to 1.0, in hopes that I would be able to relax and breath more comfortably. Today is another plateau day, I took two bottles again and seem to only take about 20-25ccs at a time, doing more than one thing at a time is for big boys and I am just a baby! Please continue to keep me in your thoughts and prayers!

ONE HUNDRED-ELEVEN

2010-07-26T03:24:00.000-07:00

Hi! This is me just relaxing in my swing, today is a plateau day, which is great after the past couple of days. I am still at .25 liters and I took 18ccs from a bottle. I do have a wheezing sound when I breath, but only sometimes, so the doctor and nurses are monitoring me. Have a wonderful day and come back later!

DAY ONE HUNDRED-TEN

2010-07-24T19:43:00.000-07:00

Today was a pretty quiet day, which is good considering all of the information that the doctor shared yesterday. I still take two bottles a day, today I took 15ccs from one and 10ccs from the other. Guess what, the doctor also turned down my air again to .25 liters! Please continue to pray for me, Mom and Dad, even as we get closer and closer to going home, this is still a roller coaster ride.

DAY ONE HUNDRED-NINE

2010-07-24T18:10:00.001-07:00

The care conference was hard! The doctor discussed transferring me to Plano to have hernia surgery. He also spoke about the possibility of a G-tube. The G-tube is a tube that is in my stomach that Mom and Dad can put milk into to feed me. I would still be able to take a bottle, but what I do not finish can go in the tube. I have the suck, swallow, breath process down, but I do not have the stamina to take a full bottle. Please pray about me being able to take a bottle I know Mom and Dad are concerned about taking me home with extra "accessories", but as always they will do what is best for me. To end on a more positive note, the eye doctor said that there has been no change which is awesome, hopefully that means that my eyes will not get worse, but can now grow healthy and strong! I weigh 7 pounds and 15 ounces.

DAY ONE HUNDRED-EIGHT

2010-07-24T16:54:00.001-07:00

Today the doctor increased my milk to 62ccs and lowered the calories to 24. I weigh 7 pounds, 13 ounces and I took 20ccs and 10ccs from my bottles today. During my second bottle I was tired, that is why I did not do as well. Tomorrow Mom and Dad have a care conference with the doctor, hmmm...I wonder what the plan will be.

DAY ONE HUNDRED-SEVEN

2010-07-24T16:44:00.001-07:00

Here I am taking one of my bottles. The doctor increased my diuretic due to my weight gain and he turned down my liters of air to .5, typically babies like me go home on .1 liters of air at 100%. Today my weight increased again to 7 pounds and 11 ounces.

DAY ONE HUNDRED-SIX

2010-07-24T13:27:00.000-07:00

Well folks, today is my due date, 7-11-10! Mom and Dad brought cupcakes for the NICU and I got a bath. What do you think of my faux hawk? I want to be just like Dad! Other than it being my special day, it has been a plateau day. I still get two bottles a day and I took 22ccs and 20 ccs respectively. I weigh 7 pounds and 8 ounces. Today has been a good day, thank you for your continued thoughts and prayers!

DAY ONE HUNDRED-FIVE

2010-07-15T06:26:00.001-07:00

My lungs never fail, the doctor turned my air down to 1.0 liter. I took a bottle today and was able to eat 25 ccs. Progress is good, baby steps are good. Mom and I were talking about my "birth date" coming up and I think we are going to have a party! Come back and see what Mom and I have planned.

DAY ONE HUNDRED-FOUR

2010-07-15T06:03:00.000-07:00

Can you believe I had another bath today? Yes I do get dirty, these double chins and elbow dimples gather dirt. The doctor increased my milk to 2 ounces at every feeding. Today is one of those plateau days I talked about, but I will tell you that the doctor and nurses were whispering again...something big is coming, I can feel it in my lungs.

DAY ONE HUNDRED-THREE

2010-07-15T05:41:00.000-07:00

Hi! Guess what, I weigh 7 pounds, 4 ounces and the doctor turned my air down to 1.5 liters! I am making progress! I took a bottle today and I finished 20 ccs out of 58. Let me tell you, it is hard to remember to suck, swallow and breathe! The nurses say it takes time and it will happen like that, a light bulb turning on. As I get better I may have more plateau days, but if you have come this far with me please stay with me a little longer.

DAY ONE HUNDRED-TWO

2010-07-15T05:24:00.000-07:00

Today has been a good day! I am still on 2.0 liters of air and I get 58 ccs of milk at each feeding. Yesterday, after pictures in my 4th of July outfit, I had to change clothes so I thought I would wear my "ladies" shirt! The nurses really liked this one and giggled at how cute I am! Since it is Monday I got a bath and I changed my clothes yet again, this time I put on another shirt, this time I wanted to give Dad a heads up! Thank you for your thoughts and prayers and keep the great comments coming.

DAY ONE HUNDRED-ONE

2010-07-13T07:50:00.000-07:00

HAPPY 4th of July! I had a rough night last night, I have to work on just 2.0 liters of air. As the day went on I got better, I had a HUGE diaper, I weigh 7 pounds 2 ounces and I am definitely perking up! Have a wonderful day celebrating with family and friends and eat a hot dog for me!

DAY ONE HUNDRED

2010-07-13T07:26:00.000-07:00

WOW, One hundred days in the NICU! The doctor moved my air to 2.0 and increased my milk to 58 ccs. Guess what, I took 35 ccs by bottle, YES, I am back! This is our most recent family picture and it happens to be Mom's favorite, she says I look just like Dad! You may be able to see from the picture that the nurse had to move my IV to my head, they tried both of my arms, but that did not work, oh well, the medicine will not last much longer!

DAY NINETY-NINE

2010-07-13T07:14:00.000-07:00

Today has been tough! Mom called me Cranky McCrankerson, she tells me that the weather is bad and that may be why I feel out of sorts. I felt so cranky that I refused one of my bottles, let me tell you, it takes a lot for me to suck, swallow and breath. The doctor told Mom that I hit the seven pound mark, woo hoo!! The nurses told Mom and Dad that it will take me time to recover from being sick, so keep that im mind as we move forward.

DAY NINETY-EIGHT

2010-07-02T06:25:00.000-07:00

I got my bottle back today, in fact, I got two bottles today! I am doing well on 2.5 liters of air and I weigh 6 pounds and 14 ounces. The doctor is lowering the supplements added to my milk and the nurse drew blood this morning and guess what, my infection levels are below 1.0 which means I am all better! The doctor wants to keep the antibiotics for ten days so I should be done by July 7th. Mom and Dad were telling me about the 4th of July and why we celebrate, have a wonderful weekend and check back with me soon, I am about to mark 100 days in the hospital.

DAY NINETY-SEVEN

2010-07-01T04:25:00.001-07:00

Mom says I look like Dad when I make this face! Well, my air was turned down to 2.5 liters, you would think I would remember that when the doctor whispers this is what happens. I am proud to say though that I am doing well and I also get to have my bottle back tomorrow! Guess what I weigh 6 pounds and 12 ounces! I sat up in bed again today, I love watching what is going on and flirting with the nurses. Thank you for your continued prayers and support, we are quickly coming up on 100 days in the NICU, wow, it has gone quickly, super slow and there have been good days and bad days, I guess that is life!

DAY NINETY-SIX

2010-06-29T12:42:00.001-07:00

Well, I think I have turned the corner and you know what, Mom was right, I feel much better after my bath! When Mom was talking to the doctor today he mentioned he was glad that even though I was sick I continued to eat well and did not experience additional respiratory issues. As I have always said, I am holding my own. The doctor said that he would draw more blood on Thursday and do another urine test on Friday. If I have turned the corner and really am getting better the doctor said we could try a bottle again at the end of the week, there were other things said but the adults were whispering so I could not make out the rest of the plan, do happen to know what they said? If you do please let me in on the secret! When Mom and Dad came to see me tonight I was sitting up in bed and was about to get in the swing, I am not sure if I like the swing just yet, but I do love sitting up looking at everyone and everything!

DAY NINETY-FIVE

2010-06-29T12:13:00.001-07:00

No big changes today. The doctor and nurses made slight changes to my supplements due to my increased weight and and lowered the calories in my milk from 28 to 26. The doctor did mention to Mom that because I have a urinary tract infection he would like to make sure that the urine is not going from my bladder back to my kidneys. This is done through a dye test and can be done on an outpatient basis after I go home or can be taken care of at the same time the doctor repairs my hernias. When Mom came to visit me this morning I was sweating, she told me that I was getting better and I would probably feel a lot better tomorrow, especially after I had my bath. Thank you for the prayers and support.

DAY NINETY-FOUR

2010-06-28T13:31:00.000-07:00

Well the tests have come back and I have a blood infection and a urinary tract infection. The doctor changed one of my antibiotics to better treat my urinary infection and other than that the only thing that has changed is the amount of milk I get, the doctor increased it to 52ccs. I am a growing boy who is trying his very best to get better so I can go home and be with Mom and Dad all the time. The nurses let Mom know that I weigh 6 pounds, 10 ounces, that was a surprise, even for me, but like I said I am a growing boy and I love food!

DAY NINETY-THREE

2010-06-28T13:05:00.000-07:00

Today I am 3 months old! Nothing has come back from the tests yet, but the doctors are going to keep me on antibiotics for at least 7 days. The doctor does not want to move forward with the bottle or weaning me off my oxygen until I am feeling more like myself. I still feel tired and take a lot of naps, but the medicine is helping. Mom and Dad came to visit today and we talked about resting and getting better. Thank you for the prayers! I will keep you posted on how I am feeling and what the plan is over the next few days.

DAY NINETY-TWO

2010-06-28T07:43:00.000-07:00

Ohh, I am so tired! I've gotten sick, no one told me you had to be sick to be in the NICU! Yesterday I heard the doctor talking about turning down my air and my new neighbor told me they did not feel good, so I decided to get sick last night. The doctors and nurses put me on two antibiotics, took a chest x-ray as well as blood and urine to run some tests. The doctors know for sure it is not pneumonia, but they are waiting for the other tests to come back. Even though I do not feel great I am still eating so the doctor increased my food to 50ccs. As I have said before nothing, and I mean nothing, comes between me and food!

DAY NINETY-ONE

2010-06-25T05:12:00.000-07:00

Today was another quiet day. My eyes are still a little swollen from the eye exam, but I feel better today then I did yesterday. When the doctor made his rounds he discussed with Mom and the nurses that when need to lower my liters of air to 2.5, he was not sneaky about it today, I heard his plan, I will try my best to not get too tired! When Mom came to visit me the nurse asked her to bring in some other clothes because I have outgrown my preemie onesies, so keep checking back to see my new duds. When you see Mom and Dad give them a hug and please continue to pray for my continued progress!

DAY NINETY

2010-06-24T05:02:00.000-07:00

The eye doctor came today and he reported no changes which is fantastic, that means that my eyes have not gotten worse and they should self-correct over time. The eye doctor came in the morning and I was exhausted the rest of the day as you can see! In the afternoon I was able to take another bottle even though I was tired because NOTHING comes between me and food. Mom and Dad came to visit me in the evening and they got to see me hanging out in a bouncy seat and I told them in no uncertain terms that I want one when I get home. I have reached another milestone, drum roll please, I weigh 6 pounds! Even though I am super tired it has been a wonderful day! Prayers of thanksgiving are being said for my progress and I know Mom and Dad are very thankful and praise God for their many blessings!

DAY EIGHTY-NINE

2010-06-23T04:04:00.001-07:00

Today was another big day, that doctor is sneaky! He lowered my liters of air to 3.0 without saying anything to me! Mom came to see me this morning and gave me a bath and the doctor came by to see how I was doing and the only thing I heard was that my milk would increase another 3 ccs to 48. Then I saw a lot of hand movements and smiles and that was it. I took another 30 ccs from a bottle this afternoon and then Mom and Dad came to visit with me. This picture was taken when Mom and Dad were there and they were talking with me about how I was feeling and that they were very proud of me and then they let me in on the secret that the doctor had lowered my air again. That doctor is sneaky, but he knows what he is doing because when Mom called to check on me later in the evening I was holding my own and resting comfortably. The eye doctor comes tomorrow to check on me and I will keep you posted. Thank you for your continued prayers and well wishes!

DAY EIGHTY-EIGHT

2010-06-21T17:36:00.000-07:00

Today was a manic Monday! Mom came to visit me this morning and told me that after her and Dad visited me tonight he had to drive to Oklahoma on business. When Mom came to see me this morning the doctor was there making his rounds so we chatted about the plan for the remaining month. Minimal changes were made, I was taking four supplements, the doctor discontinued one and changed the dosages on the other three. The doctor does not want to make changes to my liters of air just yet, maybe later this week. I took a bottle this morning and drank 30 ccs out of 45. Yeah me!!! Thank you for your prayers and support.

DAY EIGHTY-SEVEN

2010-06-21T06:30:00.000-07:00

HAPPY FATHER'S DAY Benjamin Allen Parker! Did you know that I have the same middle name as my Dad, how awesome is that? Dad loved my card. It had two puppies on it, a Dad puppy and a son puppy and they were doing fun things together like playing and reading books. On the inside of the card the puppies were holding hands, I wrote my name on the little puppy and Dad's name on the big puppy and then I drew a beard on the big puppy because Dad has a beard. Mom gave Dad his gift at the house, do you know what he got? He got a weed eater, he asked for it and he got it. Guess what, I weigh 5 pounds 14 ounces and I took 30 ml of milk from my bottle today, woo hoo!!! Today has been a great day, God is so good and he has a plan for me!

DAY EIGHTY-SIX

2010-06-21T06:02:00.000-07:00

Mom was right, again, is that always going to happen? I am tired again today, but holding my own at 3.5 liters. The picture is of Mom and I talking about doing my best and trying hard to get stronger and feel better. Mom told me that she is ready for me to be home but the doctor and nurses want to monitor me for a few more weeks. I took another bottle today and only got down 10 out of 45 ml down, I am so exhausted! Mom reminded me that tomorrow is Dad's special day and I need to have my card ready to go, I might need to get the nurses to help me finish up! Mom told me that she has already hidden Dad's gift at the house so we will be ready for his special day!

DAY EIGHTY-FIVE

2010-06-21T05:17:00.001-07:00

I am really S L E E P Y! The surprise I received today was that the doctor turned down my liters of air from 4 to 3.5. On top of that my milk was increased to 45 ml. Man! I am really having to work today, no hanging out and just laying around for me. When I practiced taking my bottle I was able to drink 13 of the 45 ml and then the rest I took through my feeding tube. My weight today is 5 pounds and 10 ounces. Mom told me that the doctor whispered yesterday about the changes so that I would not hear and get nervous about having to do well today, but I am doing well and holding my own. Mom prepared me for probably being tired for the next couple of days while my body gets used to working harder and getting stronger with less oxygen. Well I am going to continue resting and I will keep you posted on my progress, thank you for staying with me and continuing to pray for my growth and health.

DAY EIGHTY-FOUR

2010-06-21T05:05:00.000-07:00

So I had a bath today at 11:00 a.m. with Mom and I helped her pick out my clothes, I look really good, what do you think? During my bath Mom and I talked about how well I am doing and how proud she is of me! Then when Dad got done with work he came and gave me my bottle, it has been another great day! The doctor spoke to Mom and Dad in whispers today, I wonder what they are planning, I hope it is a really good surprise! Come back tomorrow to see what happens.

DAY EIGHTY-THREE

2010-06-21T04:16:00.001-07:00

The doctor made no changes today. The nurses talked to me about practicing with the bottle again. After drinking from the bottle I needed a nap! Today has been a great day, taking the bottle was a success and now I plan to spend the rest of the day sleeping, looking cute and laying around flirting with the nurses. Mom and I made plans for Father's Day, she is going to pick up a card for me to give to Dad and she will get his gift and hide it at the house. I hope everyone has a wonderful day, talk to you later!

DAY EIGHTY-TWO

2010-06-19T07:03:00.000-07:00

Today was a good day! I got to spend time with Mom and Dad and the doctor made changes to my care. As you know I have been drinking protein shakes to "bulk" up, but today the doctor lowered the amount of protein in my milk and upped the amount of calories. The doctor discontinued the caffeine I was getting and reminded Mom and Dad that before I go home he will wean me off the additional sodium and electrolytes that I take. I took a bath and practiced taking milk from a bottle, yep that is right, I said a bottle, I drank milk from a bottle. Prayers of thanksgiving are given on my behalf from family and friends, God is good!

DAY EIGHTY-ONE

2010-06-19T06:30:00.000-07:00

Today was the usual tests to check and make sure that my body is doing what it needs to, like make blood, and regulating other fluids and functions. Everything looks good, based on the test results, so YEAH me, I am definitely growing and maturing! This afternoon Dad and I spent time together talking and bonding, I love being able to do that! Thank you for continuing to pray for my growth and development.

DAY EIGHTY

2010-06-18T13:16:00.000-07:00

Mom and Dad think I look good in hats, which one do you like better? Today I weigh 5 pounds, 4 ounces and I am 16 1/2 inches long. I am still on 5 liters of oxygen, remember I tried 4 liters a couple of times but got really tired. At 1:30 today the doctor moved me to 3.5 liters and tricked me, it worked! I am able to tolerate it, YEAH! Mom and I are always talking about how I am just like Dad, today we talked about how I run "hot" my body temperature always seems a little bit warmer than typical, but when the nurses run tests to make sure I am not sick the tests come back normal, which is great. I have started talking to the nurses about not wrapping me in a blanket, why can I not just lay around with my clothes on, why a blanket too? They wrap me in a blanket anyway, until I get "warm" again and then sometimes, I get to lay around in my clothes and "cool" off.

DAY SEVENTY-NINE

2010-06-18T13:03:00.001-07:00

Today was the care conference with the doctor. The plan is to begin weaning me off of my supplements, like caffeine and diuretics, lower the protein in my milk and raise the calories and have me take my milk form a bottle instead of a tube. The doctor told Mom and Dad that I will more then likely come home with oxygen, but the nurses will teach them how to monitor that before I go home. Today for me is another plateau day, I am feeling good and I am really glad there is a plan in place for me to go home. The doctor did tell Mom and Dad that my discharge date will not be until the end of July and that is if everything goes well. I will try my very best to have everything go well, I will listen to Mom and Dad and the doctors and nurses and grow big and strong. Please continue to pray for me and Mom and Dad as we see the end in sight.

DAY SEVENTY-EIGHT

2010-06-18T12:49:00.000-07:00

Can you tell that I like monkeys? Today was another plateau day, Dad and I spent time talking and bonding, I love when we do that! Dad told me that he had to see his doctor today for a check up and he is doing well but the doctor wants him to wear his CPAP mask when we sleeps at night. He promised me that he would be better at wearing his mask so that he can keep up with me when I come home! I love Mom and Dad very much and cannot wait to be at home with them. Tomorrow is the care conference with the doctor and Mom and Dad should get a plan in place for the rest of my stay in the NICU.

DAY SEVENTY-SEVEN

2010-06-16T14:07:00.001-07:00

The doctor tried to lower my liters again to 4 and it did not work. I still need help breathing, hopefully in the next couple of days I will do better on less support. Mom and Dad have a care conference with the doctor on Saturday to discuss the plan for the rest of my stay in the NICU. I broke the 5 pound mark, I weigh 5 pounds and 1 ounce!! God is so good! Please send up a prayer of thanksgiving for my great progress!

DAY SEVENTY-SIX

2010-06-16T13:55:00.000-07:00

My Mom says that she loves me and she REALLY loves my cheeks. I did not get a fever with my second round of immunizations which is good. Today is a plateau day, I plan to hang out and take it easy today. If you see Mom and Dad give them a hug and ask to see my latest pictures!

DAY SEVENTY-FIVE

2010-06-16T13:44:00.000-07:00

Hi everybody! I had a slight fever this morning because of my immunizations yesterday, but the nurse gave some Tylenol and I feel better. The doctor increased my milk to 40 ccs and I will get my last round of immunizations this afternoon. I weigh 4 pounds and 15 ounces. The plan is to hang out today and get bigger and stronger. Thank you for all of your support and love!

DAY SEVENTY-FOUR

2010-06-14T05:57:00.000-07:00

When it rains it pours! The eye doctor came today and I got my first round of immunization shots, I need a nap! The eye doctor reported no change, which is wonderful! My eyes are not getting worse and the issues they have now are self-correctable within the first couple of years, I am fearfully and wonderfully made, it is amazing what God allows the body to correct on its own given time. The doctor again increased my milk to 39 ccs! Thank you for the continued prayers, God is answering them!

DAY SEVENTY-THREE

2010-06-14T05:40:00.001-07:00

Remember I told you that I have protein shakes, well they take a lot of energy to digest and they make me a stinky boy, if you know what I mean. Because of the name I have made for myself with the nurses they asked Mom to bring me some nice smellling shampoo and lotion. Today was the first day that I got to take a bath and use my new shampoo and lotion. Mom and Dad got to bath me and it was really nice. I got to wear my new shorts that Mom got from Build-A-Bear, where she got my awesome overalls, they do not look like a skirt so I feel much better! after my bath Mom and Dad went to get me some things for my crib. The nurses suggested that they get a mobile, a mirror and something that I can watch when I lay on my side, and boy did they come through! The nurses suggested these things because I am getting to be a big boy, I am tracking with my eyes and they do not want me to get bored in my crib. I now weigh 4 pounds, 12 ounces and I am 16 1/2 inches long. My doctor increased my milk to 37 ccs, that is almost 10 ounces a day, woo hoo!

DAY SEVENTY-TWO

2010-06-14T05:33:00.001-07:00

The doctor had to put me back on 5 liters of air, I promise I tried really hard, but I got tired and needed more help. Mom is very proud of me, she told me so, but she also said that this was a loop-de-loop in the roller coaster ride that is the NICU. On a good note I now weigh 4 pounds, 10 ounces and I am 16 inches long! The eye doctor was unable to come see me today, he will probably be here tomorrow.

DAY SEVENTY-ONE

2010-06-14T05:13:00.000-07:00

The doctor has weaned my air to 4 liters, bottle here I come! Mom told me that the doctor wants to give me shots now that I am 2 months old to help me stay healthy, she said they were called immunizations. The immunizations will happen over the next few days, the doctor wants me to be as big and strong as possible, because even gigantor, term babies do not feel good after getting shots. The eye doctor is coming back in a couple of days to check my eyes again. Mom and I have talked about the eye doctor coming back and she is concerned about what the doctor will say. God has blessed my growth so far and she knows that prayer is the answer, but she still worries about me. Love you Mom! Please continue to pray for me and Mom and Dad.

DAY SEVENTY

2010-06-14T04:45:00.000-07:00

***The following information may be sensitive to some readers, that means you Mom!***

I've shared before that the doctor has added supplements to my milk, one of which is protein. Apparently my protein shakes are "clogging" me up and I had to get an enema to help me go to the bathroom. It worked and man do I feel better! The doctor has increased my milk to 35 ounces and my oxygen is at 35% with 5 liters, I need to be at 2 liters before I can take my milk in a bottle instead of the feeding tube.

DAY SIXTY-NINE

2010-06-14T04:23:00.001-07:00

Today was a busy day! The eye doctor came to check my eyes today and they have not improved, but they really have not worsened either. From what Mom tells me, my eyes are still growing and maturing and the doctor is monitoring the growth of the blood vessels around the eye. The doctor and nurses also turned down the amount of air going through my nasal cannula from 6 liters to 5 liters. That means that I do not need as much pressure to keep my lungs inflated. When Mom and I talk about my oxygen we talk about the liters and the the amount of oxygen going through the cannula, I usually need 30-40% oxygen. My lungs are growing and it will take time for the doctors to wean me off the oxygen, I may even go home with oxygen.

Mom's friends at work gave us a "bear" essentials shower, Mom had a great time and she tells me I have plenty of stuff waiting for me at home. Thank you for all of the wonderful comments, well wishes and gifts! Please continue to pray for my growth and development and I will keep you posted.