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.

Reaching Another Milestone

My son has come a long way from his early arrival in June. I went in for my late night visit to hold him before his feeding. His nurse speaks and I go to say hello to my little king. I notice that he didn't have a hat on today. I comment to myself that my baby has the "preemie head." lol Then I notice that he has nasal prongs in his nose instead of the CPAP! I looked at the CPAP machine by his bed and he lights were off. I was so excited I could have cried. Kylan has reached another milestone. The next step will be for him to graduate to the "low" flow nasal cannula. At that point he will be able to take the bottle. He is now 4 lbs 8 oz. I am super proud of my little bundle.

"I Can Read With My Eyes Shut"

Today Kylan had surgery on his eyes. The retina was attempting to detach and he had blood vessels in the front and back of his eyes that were not supposed to be there. This is all caused by his early dependency on the ventilator. The presence of oxygen often causes these problems in preemies. I went to check on my boy during my lunch break. He was resting well on his new open hospital crib. He has graduated from the incubator! I have been so proud of him and he continues to make me a proud mother. Dr. Frank will check Ky's eyes again next week to see the results of the surgery. Prayerfully this will be the last surgery he will have to endure. This process is so hard and can be draining at times...even when it doesn't seem like I'm being drained, at the end of the day it all catches up with me. But all in all...I know where my strength comes from.

Rough & Tumble

I go to see the little King this Tuesday as I always do. He has been so alert lately when I come to see him. This particular day his nurse says to me that "your son has been a busy boy today." I didn't think anything of it because I've seen his fiesty side already. She went on to say that she had just placed him on his belly and got him all settled in when about five minutes later his monitor is signaling a problem. The respiratory therapist goes over to Kylan's bedside to discover he was now laying on his back with all of his leads to monitor his vital signs off. My child had turned himself over! The RT said he was looking at her like "what?" I could only laugh because a week prior I noticed him getting upset from being on his belly and he was pushing so hard with his legs and lifting his behind up. All I could think is this young man is strong and I am going to have my hands full. :) He is full of life and has such a funny personality already. I look forward to the days to come.

Crossing Hurdles

Today marked a very important day for Kylan. He no longer uses the ventilator! It has been a long time coming and I am so grateful to God for strengthening my boy. He still has more strides to take before we can take him home. Kylan had an eye exam today and the doctor did not like what he saw. They are preparing to get him started on treatments for his vision next week. I am praying for God to perform another miracle on my baby to heal his eyes. I know He can do it because He's done great things already.

IN CASE YOU DIDN'T KNOW...

The meaning of Kylan...it's the combination of Kyle + Ryan. Kyle means narrow. Ryan means king. King Kylan is his name!

I went to visit my baby as I do everyday after work. I had gotten great news that he was now 3 lbs and 13 ozs earlier today. He is also 15.5 inches long. My baby boy is moving right along. When I walked into the NICU he was resting so peacefully. He opened his eyes when I called his name and then he went back to sleep. Today he needed a higher level of dependency of oxygen and he had received another blood transfusion. It's funny how if my baby has a setback how it affects my mood. I was a bit somber because of it. The constant hospital visits are draining at times especially when there are so many memories in that building.

I shook off my personal emotions and focused on my baby boy. I let him listen to his Baby Mozart and then I read him his Dr. Seuss book. Niheim came in and talked to Kylan and video taped me reading to my boy. In the world of preemie motherhood every small situation is sooo important. Who else would video tape their child kicking their feet in the air or reading a book? :)

Kylan is now 3 lbs 6 oz. My fighter is progressing everyday. He's now taking 1 oz of milk every 3 hours. Last Friday when I went to visit him, his nurses were taking out the PICC line (peripherally inserted central catheter) that was in his head. The PICC line is basically an IV tube that goes from his head to his belly. It is used to feed him nourishment and sometimes his medicine. Now Ky is well enough to take his milk and meds through the tube that is inserted down his throat. Thr next big step is to wean him off of the ventilator. The more weight he gains the better his lung tissues will heal. The ventilator causes lung issues after a long period of dependency on it. That's our next milestone and I can't wait! That means I will soon be able to hold my baby again.

Kylan's Health Update

God is good and my son is another living miracle by the grace of God. While I was sitting at Kylan's incubator talking to him his doctor came to give me an updated report from his cranial ultrasound. When Ky was at Egleston Hospital he was diagnosed with cranial bleed which could lead to brain damage or severe developmental issues. The doctor's report after yesterday's ultrasound shows NO bleeding! His doctor was shocked at the results and stated his results weren't typical. God is good! Not to mention my son is not the typical either. :) His nurse was teary eyed. She was almost lost for words. She said in her 30 years of nursing she hadn't seen such an alert baby at his age. she knows my son is coherent. He looks her directly in her eyes and holds her hand (he has a tight grip). In most cases with babies at his gestational stage their responses are not up to par. I told his nurse that Ky has soooooooo many people praying for him.

In the midst of the storm God reminds you of his power and who He is.

Kylan's Health Update

Ky is now 3 lbs and 1 oz! Hes gained an half of a pound in a week. He is up to 19 cc's of milk every three hours. On Saturday he had a spinal tap performed to check for bacteria in his blood around his spine and the results are negative! On Monday Ky had his first eye exam which only showed prematurity of retina which is to be expected due to his gestation at birth.

Today was an adventurous day for Kylan and me. It was my first day back in the office after being out since April 16th! As for King Ky, it was his big day to ride in the ambulance again back to Peidmont Hospital. I unlocked the door to my office to find festive "welcome back" decor all over my office. It was a delightful way to start the day. I then looked at my phone and saw that I had 211 voicemail messages and 323 emails to check. Needless to say...I think you know what I did for the most part of my day.

Kylan arrived back at Piedmont approximately around 10am. It was fairly odd not to be at the hospital when he arrived. I called from my office three times to make sure he arrived and that all was well with him. When I finally got off work which seemed like forever, I went to see him. My mother was already there talking to him. He was wide awake and he was looking around as if he knew he was in a different place. For me it was hard to be back in the same hallways where I’d been in the labor in delivery rooms twice in one month. The room where I held Kaiden for the first and last time and the room where I had held Khristian as he took his last breath. It was very hard. I tried not to think about that aspect and just focus on my King…it was hard. The nurses were running around in frenzy because they were short staffed for the evening. I was not pleased with what I saw…my motherly instincts kicked in full gear. I was upset because I felt like Kylan could have just stayed at the Egleston Hospital (Children’s Healthcare of Atlanta). The atmosphere was just totally different there, more nurturing. My mother calmed me down and we left because the NICU was receiving another admission.

I went to dinner with mom and enjoyed Wolfgang Puck barbeque Chicken pizza. After that I met up with the best support system ever Niheim. I vented some more to him then we went back to see Kylan with an open mind. It was the night I shift and things had mellowed out much more. Kylan was at peace and so was I. I played his Baby Mozart CD and read him “I Can Read with My Eyes Shut” by Dr. Seuss. Niheim spoke Japanese to Kylan and went over Spanish. I have to educate him early!

The First of Many Moments

August 4th marked a special moment in time for Kylan and me. After 47 days of praying, waiting and even pouting a bit about it, I FINALLY was able to hold my baby boy for the first time this Tuesday. Most mothers are fortunate enough to bond with their infant moments after their child is brought into this world. Words cannot express the joy of this moment that I had imagined about over and over again but I'll do my best to put it into writing for you. :)

Kylan is still utilizing the low frequency ventilator for breathing so the respiratory therapist and his nurse for the day had to prepare him to be moved just a few feet from incubator to my arms. I sat patiently as they placed my little king into my arms. Truthfully speaking if it weren’t for the extra cords and ventilator tubing carefully taped to my arm, I could have held Kylan with one hand. He snuggled closely to me and soon went to sleep. I enjoyed seeing his face so closely and being able to smell his scent for the first time. There was no fear or intimidation of the medical equipment or his small size; it was just me and my son. We have been through so much in the past two months. I am so grateful that God has graced me with the physical presence of Kylan to aid in my emotional strength. I promise to love and do my best to provide all that my son needs in life.

My Weekly Sleepover with Kylan

Since Kylan was admitted to Egleston Children's Healthcare of Atlanta on June 30th, I've been able to take advantage of the rooms they lend to families with babies in the NICU. It is great to be able to walk down the hall and read Ky his Dr. Seuss stories, listen to his Baby Mozart or even change his teeny weenie diaper. I have also been able to check his temperature and give him a bath (in which he hated very moment of it). The first time I gave him a bath he cried and so did I. How crazy was that? I just hated to see him cry and since he has the ventilator tube down his throat you can't hear him make sounds. For me it made his cry seem even worse that is was because it was mute. I don't know if that makes sense...maybe it was just postpartum hormones.

If all goes as the doctors wish this will be Ky's last week here at Egleston. His health is where they wish it to be and they want to send him back to Piedmont Hospital to grow. As of today he is 2lbs and 6oz! Although I love this hospital and their special care to families with such critical issues; it is great that my pumpkin is getting better each day and will be sent back to his birth hospital to grow. The nurses and doctors from Piedmont call and check in his status often. My favorite nickname from one of the nurse's at Piedmont is "chicken nugget." I must say I will miss the care here at Egleston; they treat your child as a prince or princess! My boy on the otherhand…he’s my King Kylan.

P.S. Kylan smiled for mommy today. Mommy's first sight of her son's happiness.

Who Is This Little Man?

Oh my goodness...I looked at my son today in the NICU and it hit me that he soon will be home stirring up things. Kylan kept kicking his left leg up on the cushion but when his nurse would come to check on him he would place his feet back down as if he knew he wasn't supposed to be doing all that movement. The preemie characteristics are starting to fade and my pumpkin is starting to fill out. He has a beautiful brown skin tone. Although he may seem small to other looking at him...in mommy's eyes...that's my big boy!

I look at Kylan and wonder a million things. I wonder what his interests will be. I wonder if he'll be musically inclined. Will he be a dare devil? Who will spoil him the most? Myself? Gran? Papi? :)

One thing I know for sure...he is loved and my heart anticipates the day when I am able to take him on his first ride in a car to his new home with mommy and the greatest grandparents in the world.