My Joyful Little Boy

Words can't begin to describe my joy of being a mother. I wake up every morning to little feet kicking me in my back, followed by eye contact (his eyes are gorgeous), then he starts smiling and then it turns into a ten minute talking session. I swear Kylan is really telling me something. He talks (babbles) soooooo much. I love it. Lately I have been thinking back to when he cried for the first time in my presence. It was the day I gave him a bath at Egleston with nurse Caris. It was the silent cry because only his tiny little face showed me the expression of how much he hated every moment of bathtime. Now 8 months later...Kylan LOVES bath time. As soon as I put him in his whale tub he starts kicking, splashing and talking. Oh and the cries now aren't so silent anymore. These lungs that we have worked so hard to strengthen fill the house when he wants your attention. I remember the first sounds he made after the ventilator was removed. The cry was so faint....far from the sounds of Kylan's 9 month only cry.

He had his month follow up this week and he did very well. He is now 15.8 lbs and growing. I have let him try almost all of the fruits and veggies of Gerber. I have yet to find something he does not like. I think that is pretty funny. I started him off with veggies first then added the fruits. I've read that there is no research stating if you start babies off on fruits first they won't eat the veggies BUT the grandmothers and great aunts recommended veggies first. I figured it must work...either that or my son is greedy. :)


For once there isn't much activity with Kylan as far as doctors visits. We do not have another appointment until the end of April! Woohoo! We are almost there. Normalcy is on the horizon. Now my next task is to get Kylan to start sleeping in his crib. I tryed the other night and it was an epic fail. Kylan woke up scream bloody murder where is my mother! We will get there.

Almost a "Normal" Parent

Kylan has been home from the hospital for four months now. It seems as if it has been longer than that. He has kept me busy as any preemie with a gazillion doctors appointments would. Since my last blog Kylan has come off all the medications he was sent home on from the hospital. The pulmonologist had a sleep study set up to see if he was ready to be completely weened off the oxygen. The night of the sleep study there was only a few hours of sleep. Kylan was hooked up to 22 cords to check various rhythms and beats of his body. Kylan was soooooo restless and fought for the most part of the night. The respiratory therapist had him wrapped up pretty good but Kylan is a fighter none the less and found away to take some off the probes off of his head.

The results of the study showed that Kylan has moderate sleep apnea so he has to use oxygen when sleeping at night. Although I was hoping this oxygen battle was over it is nice not to have to carry around the oxygen tank and monitor. I can move alot faster! Kylan is a much more pleasant baby as well. After the sleep study we had to go see the cardiologist to rule out pulmonary hypertension (high blood pressure). High blood pressure in babies with weaker lungs is caused by the heart pumping harder to damaged lungs. So in order to test that the doctor ordered an EKG and an echocardiogram. Kylan was being soooo active that we needed two nurses and myself to hold him down just to get a 15 second reading. The nurses were laughing at him and he was laughing too. He apparently thought it was time to play. The last nurse was ready to leave and didn't find it funny that Kylan was scooting down the table as she tried to perform the echocardiogram. It was quite humorous to me. :) I had to get the bottle to hold him still. After the results came it the doctor gave him the clear stating his heart looks good and we won't need to follow up with him. I was beyond excited not to have to add another doctor to the list ESPECIALLY a heart doctor.



The next doctor that we had to visit this week was the ENT specialist. He wanted to check Kylan's adenoids to see if they were causing the apnea. After a little probing the doctor stated that his sleep apnea is not the severe and he just believes we should keep him on oxygen and let time do its course. We will have to repeat the sleep study sometime this summer. I"m sure Kylan will enjoy that. :) The doctor told me that I am one step closer to being a normal parent! It was funny but it's true. We are almost there. It's been a rough road but there's nothing like seeing the fruits of your labor.

Development wise he is doing very well. He enjoys his "Your Baby Can Read" programs daily. He is starting to babble ALOT. He wakes up in the morning smiling and talking. It's such a blessing to see him develop and reach milestones.

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!