Happy New Year

I know it has been a while since I've written in my blog. The real work has definitely begun. Kylan keeps me busy with his many doctors visits and now his increased desire for food. I remember when in the hospital we would have to make Kylan eat using the bottle...now he kicks and screams if the bottle falls from his mouth. We have increased his cereal and will soon start on baby food. He is growing so fast. I kind of want him to slow down. I know before we know it he will be running me around like crazy.

He had his first road trip to Louisiana for Christmas. We were excited to have him meet most of his family. We kept him warm and hand sanitizer handy as everyone wanted to hold the King. I am certain that he enjoyed it because now they we are back home...he's a bit more clingy than he was before. On top of that he is teething so he's been a little bit more irritable as well. There are some nights when nothing will calm him so I just hold him until he falls asleep.

Speaking of sleep...Mr. Kylan is on his way to his crib. Yes I am about to kick him out. :) I keep him in the bed with me so I can keep a close eye on his oxygen. Almost every night now he takes the cannula off of his face. I feel bad for him because it irritates him so much, but that time is coming to an end. Dr. Lang says he should be off the oxygen support by the end of this month. He has also become a kicker...he kicks non-stop when he is awake until he wears himself out. He also moves alot more now during his sleep. I am constantly picking him back up to place him back on his side of the bed. He seems to like to keep his feet strategically placed on my side of the bed.

This is by far the most rewarding job on my resume though. The joy looking into his eyes and watching him smile is beautiful. There are times when I cry to see how far God has brought us. I shall never forget and when he is older I will teach him to not take life for granted because he has been blessed with the gift when it could have been taken from him on numerous occasions. As for now...the work resumes. Gotta love it!

Busy 3 Weeks @ Home

It has been the busiest sleepless three weeks of my life but in the same breath how beautiful it is has been to have my heart home with me. On average Kylan has had about three appointments a week. We have had to follow up with his new pediatrician, pulmonologist and see his old surgeon who perform the two of the three surgeries he has had this year.The first week Kylan slept pretty well but after he had his 4 month follow up he began to get his nights and days crossed. I personally believe they injected him with some "keep mommy up drugs." The crazy thing about it is that the stressful or frustrating part is not Kylan keeping me up. It is the monitor and the oxygen tank! Kylan is doing very well on his oxygen level. He is only on 1/8 of a liter of oxygen assistance. He came home on 1/4 of a liter. However if Kylan kicks too hard or moves too much the monitor goes off as if something is wrong with little buddy. Thank goodness the long stay in the hospital has taught me what to look for as far as signs of a problem otherwise the alarm would drive me up the wall.

Two days ago Mr. Kylan had another set of surgery performed by Dr. Parker at Egleston. Mom and Dad took off from work and Niheim also came to show support the our little pumpkin. We were to arrive at the hospital at 7:15 am. The morning started with my alarm not going off so my mom woke me up around 6:45. We didn't get to Egleston until 7:45 after sitting in traffic and a being run down my a crazy road rage lady on 75N. I was grateful this morning that I don't have to fight such foolishness daily for the time being. Kylan had his hernia (which was in his groin area) and he also had his circumcision. These sets of surgery caused for Kylan to be place under anetheisia and he also had to go back on the ventilator. After two hours of waiting (napping) in the surgery waiting room, Dr. Parker called me out to let me know all went well and I would be able to see my little man shortly. We went to the room where we would stay over night and waited for Kylan to make his entrance. About 15 minutes later Kylan came in a little drowsy. The grandparents took over and got him settled in. When Kylan woke up I heard a cry from him that I never heard before. It was a cry of pain. The pain meds from surgery had worn off and the pacifier was not working! The nurse came to the rescue with old fashion baby Tylenol. It took about fifteen minutes to settle into his system and he was knocked out for a while.
We stayed the night and the nurses watched him to make sure he had no adverse reactions to surgery then we went home the following afternoon.

It was cool to visit Egleston again where Kylan was once in such a critical state and now to see how far he has come. We saw a few of his old nurses that were excited to see him again (a few pounds heavier). It was a pleasant visit.

I haven't updated you all in a while but things are looking up for Kylan. He is now drinking all 8 bottles a day and he is scheduled to come home Tuesday of this week. Feelings of excitement and nervousness all bundled in one. I look at my 8.4 oz little man and am in awe of how far he has come. One nurse described his beginning stages as "a spot in the bed." Now he's getting too long for his hospital bed! Tonight I have been able to room in the hospital with him. It is our first alone where I am taking care of him as if we were at home but with the advantage of having nurse assistance nearby if needed. Kylan is still on oxygen support so I had to become comfortable with the use of machine that he will come home on. It was my hope that he would be off of all oxygen dependency before coming home but that will not be the case. I am happy however to start our journey together.

One Week Later

Yesterday was Kylan's 4 month birthday. Yes it's a preemie thing to celebrate the small things. His nurse made him a Birthday Card with Dr. Seuss stickers on it. :) It's hard to believe that four months ago Kylan was 1.4 lbs and struggling to hold on to life. I am so happy that he is still here with me. He is my joy. Now my joy is 7 lbs and 18 inches long! I spent my weekend with him spoiling him. He drunk a total of 4 bottles yesterday and boy did it wear him out. Kylan was knocked out in my arms with his mouth open.

Just a quick update on Kylan...He's growing like crazy! He is 6lbs 4 oz and 17.25 inches in length. This past Saturday would have been his due date if he and his brothers weren't in such a rush to see the world. :) He was able to start his first bottle on Friday and now he is up to two bottles a day! The look in his eyes when the milk first touched his tongue was priceless. He did not choke, desat on his oxygen or anything. He did very well. Only 6 more bottles to go and he will be able to take his first car ride to mommy's house!

Mr. Kylan London is coming along very well. God knows this has been a long journey and to think it's only the beginning. Kylan is 5 lbs 11 oz now. His eye exams have been going well...so well that he doesn't have to see the specialist anymore. Yay! He is still being weaned on the high flow nasal cannula and doing well with that. I imagine that he will be able to start taking the bottle next week at the rate he is going. The way the doctors and nurses introduce bottles to him is to give him one bottle a day and feed him via the OG tube for the remaining of his feedings until he tolerates the process of sucking, swallowing and breathing. When he is able to take the a bottle every three hours successfully then he will be discharged to come home. *sigh* I can't wait to start my new life with my little man.

Big Boy Kylan

This week has been an eventful week for Mr. Kylan. The first thing that occurred was his follow up appointment for his eye surgery. Dr. Frank said that he was pleased and amazed at Kylan's progress. The negative blood vessels in the front of his eyes were approximately 90% gone and the ones in the back of his eyes were 70% eliminated. Dr. Frank explained that typically the week following eye surgery they are just checking for regression in the eyes but in Kylan's case success was already starting to show. My little miracle is making me proud once again. They will continue to keep a weekly watch on his eyes but Kylan definitely is making strides in the right direction.

Another exciting moment for us this weeks is Kylan's transition to the intermediate NICU. I went to visit him last night and the nurse met me in the scrub room to let me know that he will be moved to the intermediate NICU! I sat in the room waiting on him and to my surprise the baby screaming coming around the corner was my child. He was upset about the move I guess? I had never heard those lungs works so hard since the day he was born. Once they rolled him in front of me I had to get up and soothe him. His eyes were darting around like he knew he was in a new location. I pulled out the magic pacifier and put it to work. I must say...it works like a charm. I hope it continues to do so.

Today Kylan had his first set of immunizations. He had gained a nice bit of weight 5lbs 3oz. The other exciting thing is that he is able to take big boy bathes now daily in the baby basins. They also have weaned him a bit on the high flow nasal cannula. It's been a busy week for Kylan and he is trying to keep up with the best of them. Nothing but good news from my little man. It feels great.