Sunday, September 12, 2010

DAY ONE HUNDRED SIXTY-EIGHT


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

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!

Thursday, September 9, 2010

DAY ONE HUNDRED SIXTY-SIX



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.

Wednesday, September 8, 2010

DAY ONE HUNDRED SIXTY-FIVE


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


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


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.

Monday, September 6, 2010

DAY ONE HUNDRED SIXTY-TWO


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


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.

Friday, September 3, 2010

DAY ONE HUNDRED SIXTY

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



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


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!

Wednesday, September 1, 2010

DAY ONE HUNDRED FIFTY-SEVEN


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

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.