DAY ONE HUNDRED TWENTY-FOUR

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!