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!