July 31, 2007

"Thank God for this gift, his gift. No language can praise it enough. " 2 Corinthians 9:15

Kyle is doing wonderful. We are finally settling into a comfortable routine being home with the baby...juggling work, doctors appointments and sleep. Kyle's weight is up to 7 pounds 9 ounces and his length is 20 3/4 inches. Finally, at 23 weeks old, Kyle is the size of the average newborn at birth!

Over the past week we have met with his pediatrician, a pulmonologist (lung doctor), retina specialist, nutritionist, speech therapist and an occupational therapist. I am pleased to report that his eyes are looking great...so good in fact that we do not have to meet with the retina doctor again for another month! The pulmonologist, whom Kyle will meet with on a monthly basis, said his lungs sound good. The nutritionist is happy with Kyle's weight gain and is going to continue his mix of milk, high calorie formula, safflower oil and Simply Thick. The speech therapist said that Kyle's suck is still not quite as coordinated as she would like. She gave us some tips and exercises to do with him during his feedings and we can already tell a big improvement. The occupational therapist that evaluated Kyle said his muscle tone is right where it should be, however, his neck control is a little weak. Next week we begin working with a therapist for occupational therapy on a regular basis to help with his neck muscles.

Several of you have asked how Rylee is doing. She came home from the hospital the week after Kyle did and is doing really good. Her weight is already up to to 9 pounds 3 ounces. The bottom picture above is of Rylee. Breanne had an amazing photographer take some pictures of Rylee that look like they belong in an Anne Geddes book. Rylee is such an adorable baby!!!

I am glad you all enjoyed the video of Kyle! I did not sing the song that accompanied the pictures. Trust me, if I had, you would not have enjoyed it nearly as much! When I was looking online for a preemie outfit for Kyle's baby dedication, I came across a website that had the song, which can be ordered in any name. If anyone is ever interested in the song for a baby, the website is www.soulkeepermusic.com/thebabysong/.

“O Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things…” Isaiah 25:1

In Christ Alone,

Jennifer, Joe, Madison and Kyle

July 18, 2007

"They will celebrate your abundant goodness and joyfully sing of your righteousness." Psalm 145:7

Kyle turned five months old this week!!! In celebration of this milestone, attached is a video diary of Kyle's life thus far.

We will always be thankful for all of you who have prayed to the living God on our behalf. We believe that God has been more than evident through it all. His presence has been all that we have needed and ever needed. His power and wisdom to work in the midst of this entire past five months is beyond our understanding. We praise His name for the good that has come as a result. God has been gracious to give strength and comfort, He alone deserves our worship and adoration. Even in the time of distress, heartache, uncertainty and tragedy, He remained constant and faithful. We have been to both ends of the emotional spectrum and through it all He has been there. I look forward to the day when we join our voices together and sing... ‘I stand, I stand in awe of You; I stand, I stand in awe of You; Father God to whom all praise is due, I stand in awe of You.’

“May our Lord Jesus Christ himself and God our Father, who loved us and by His grace gave us eternal encouragement and good hope, encourage your hearts and strengthen you in every good deed and word.” 2Thessalonians 2:16 NIV

In Christ alone,

Jennifer, Joe, Madison and Kyle

July 16, 2007

"Trust in the LORD forever, for the LORD, the LORD, is the Rock eternal." Isaiah 26:4

Just a quick note to let everyone know that Kyle is doing great. He is such a good baby and only fusses when he is hungry. His feedings are every 3-4 hours.... Mommy and Daddy are starting to adjust to the lack of sleep.

Much Love,

Joe, Jennifer, Madison and Kyle

July 9, 2007

"Every good and perfect gift is from above." James 1:17

Once again, sorry it has been so long since we've posted an update. Between taking care of a newborn, Kyle's doctor appointments and work, things have been so busy.

This past week Kyle met with his pediatrician and he is now a whopping 6 pounds 8 ounces! Kyle's height and weight is charted on a preemie growth chart. For his adjusted age (which is one month!) Kyle is still small for his size. According to the preemie chart, Kyle is in the 30th percentile for both height and weight, which means that 70% of babies that were born as early as Kyle are now bigger than he is. The pediatrician is not worried, and said as long as Kyle continues to gain weight he'll eventually catch up.

We met with the Retina Specialist and I am happy to report that Kyle's eyes are improving. The specialist is pretty confident that Kyle will not require additional surgery due to his ROP. While his ROP has cleared, the specialist is seeing some blood vessels in the "jelly" portion of Kyle's eyes that are abnormal. There is a slight risk that these vessels could hemorrhage at some point. If this would happen in the near future, it would require another surgery, however, if it occurs later in life the eyes are better equipped to heal themselves should a hemorrhage occur. Anyways, the retina specialist is happy enough with Kyle's progress that we do not have to return for a follow-up visit for two weeks.

Sorry again about the delay in posting. Thank you all for your support and prayers, tears and smiles. Kyle is our little guy, but I know he lives in many of your hearts just the same. One day, I will set down with him and be able to tell him just how loved he really is. We are so blessed to have each and every one of you in our lives.

Much Love,

Jennifer, Joe, Madison and Kyle

4th of July

“Because of the Lord’s great love we are not consumed, for His compassion's never fail. They are new every morning, great is your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for Him.” Lamentations 3:22-24 NIV

Just a quick note to wish everyone a happy Fourth of July. We were able to enjoy fireworks last night and began the day today watching the Stow parade. Madison marched in the parade with her soccer club. For his part, Kyle managed to sleep through both the fireworks and the parade. Between the loud booms of the fireworks and all the sirens during the parade I was surprised he never woke up...had Kyle not passed his hearing test at the hospital I might be worried!

Hope you all have a great holiday with your families and friends.

God Bless You,

Jennifer, Joe, Madison and Kyle

P.S. Don't worry...I didn't make Kyle wear the Uncle Sam outfit in public, we just put it on him for the pictures!

July 1, 2007

"But we have this treasure in jars of clay to show that his all-surpassing power is from God and not from us." 2 Corinthians 4:7

It is hard to believe that we have been home for almost two weeks now! It has been great to be home, sleep in our own beds, sit around our table for home cooked meals, laugh and just enjoy being a family - out of the hospital. The time has flown as we have been so busy between doctors appointments, work and catching up with friends and family. I also went back to work last week. It is hard leaving Kyle so soon after arriving home, but my office has been very patient throughout all of this...I have taken five months off already! Fortunately, I am able to return on a part time basis...I am going into the office two days a week and working from home one day a week. The two days a week I am working, Kyle is at home with Daddy and big sis Madison. Today I also returned to teaching Sunday school. I have missed my first grade students so much, it was great to see them!

This past week Kyle had a couple of doctors appointments at Akron Children's Hospital. First, he had a swallow study done in hopes that he was no longer aspirating his milk. If you recall, Kyle's milk was thickened because it was going into his breathing airway when he swallowed. We had hoped that the problem was resolved, but were disappointed to find that it has actually gotten a little worse. To help correct this, the amount of thickener that is added to Kyle's milk was increased by 50%. A downside of this is that it makes it that much harder for Kyle to extract the milk from his bottle. He has to work harder to get his "food" and therefore takes longer to eat and often grows tired so he is not consuming as much. The doctors will keep a close eye on Kyle's weight gain to make sure he is gaining enough. If he is not gaining enough, they will have to put a feeding tube in either Kyle's nose or stomach. Kyle would be allowed to eat as much as he can by mouth and the rest of his food would be given to him through the feeding tube. Kyle has a weigh in at the pediatricians on Tuesday at which time we will know more.

Kyle also met with the retina specialist at Akron Children's Hospital. His right eye looks great, but but unfortunately, his left eye still is showing signs of Stage Three ROP (Retinopathy of Prematurity). We are still hopeful this will correct itself, but if it does not, the retina specialist said that more laser eye surgery would help. We are praying that it does not come to this but comforted that it is an option if need be.

We have just discovered a new line of clothing for Kyle...Build A Bear clothes!!! Most of the clothes made for preemies are sleepers, and the preemie shorts/pants we have found for Kyle are still to big. The other day I tried some of Madison's Build A Bear clothes on Kyle and they actually fit! The Brown's outfit he is wearing in the above pictures is from Build A Bear. Kind of goofy, but it works. At six pounds, Kyle is still pretty small, at least in relation to a typical newborn. When we are out and about with Kyle, we are constantly asked how old he is, with people assuming he was just born. When we say that he is four and a half months old, they look at us like we are crazy. At first it made me feel uncomfortable, but lately I've looked at it as an opportunity to share God’s faithfulness. To God, who is the master physician, healer and our provider, we give him all the glory for all He has done and continues to do for Kyle.

Much Love,

Jennifer, Joe, Madison and Kyle

June 27, 2007

"As surely as you live, my lord, I am the woman who stood here beside you praying to the LORD. I prayed for this child, and the LORD has granted me what I asked of him. So now I give him to the LORD. For his whole life he will be given over to the LORD." 1 Samuel 1:26-28

Kyle had a very big weekend. On Saturday he met Joe's mom (whom the kids affectionately refer to as "Pattie Cakes") and Papa Bill. We were so excited that Kyle was finally able to meet his grandma!

On Sunday Joe and I had the opportunity to express our appreciation to God, for the miracle of Kyle, through Baby Dedication. Christian parents who dedicate a child are making a promise to the Lord to do everything within their power to raise the child in a godly way, prayerfully until he or she can make a decision on his or her own to follow God. By word and example, Joe and I have promised to model before Kyle a wonderful love for God that Kyle will hopefully want for himself someday. After the dedication, we had some close friends and family over for a celebration. Joe's mom was so gracious and prepared a delicious feast for everyone to enjoy!

We have been so busy since Kyle came home...sorry for the delay in posting. I will try to update tomorrow with more details of life since Kyle left the hospital last week.

Thanks for the continued support. We love you all!

God Bless,

Jennifer, Joe, Madison and Kyle

June 22, 2007

"But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, 23 gentleness, self-control; against such things there is no law." Galatians 5:22-23

As I write this first entry from home, I do so with heartfelt gratitude to all of you who have kept up with us and sent words of encouragement and comfort. We have been overwhelmed by the care and concern you have shown to Kyle and to our family over the past few months. Your prayers have been so appreciated and we know they have been a part of Kyle’s miraculous recovery! It is hard to believe that after Kyle has endured heart surgery, 69 days on life support/ventilator, Cytomegalovirus (CMV), anemia, bilateral hernias, Bronchopulmonary Dysplasia (BPD), bilateral renal calculi (small kidney stones), jaundice, aspiration, Respiratory Distress Syndrome, 3 bouts with pneumonia, a yeast infection, hyperglycemia, 11 blood transfusions, high blood pressure, and Stage 3 Retinopathy of Prematurity requiring Lasik Eye Surgery...we are FINALLY home!!!

This has probably been the best week of my life. The true joys of motherhood have begun. Everything is going great...or it is the lack of sleep talking!!! Ha ha! Actually, Kyle is such an easy going baby. He never cries, unless he is hungry, which seems to be every four hours like clock work. Yesterday we had our first doctors appointment with Kyle's pediatrician. Kyle has gained 6 ounces since we left the hospital on Monday...he now weighs 5 pounds 15 ounces and will very soon be tipping the scales at 6 pounds.

Several people have asked me how baby Rylee is doing. She was examined by the retina specialist on Monday and there is no surgery this week. He is going to check her again Saturday as her eyes are still hanging out around Stage 2-3 ROP with no plus (which is a good thing). Rylee just needs to master the bottles and then she'll be able to go home. Although she knows exactly what to do...she is quite a feisty one! Some days she does great and finishes most of her bottles, but others she is a diva and would rather be tube fed. Please continue to keep her in your prayers...both for the feeding issue and her eyes.

God bless you all.

Much Love,

Jennifer, Joe, Madison and Kyle

Home

“There, in the presence of the LORD your God, you and your families shall eat and shall rejoice in everything you have put your hand to, because the LORD your God has blessed you.” Deuteronomy 12:7

After 119 days in the Florida Hospital NICU, Kyle was discharged Monday morning at 11:30 am!! Kyle did great on the ride home and slept most of the trip. We made it to West Virginia Monday night before calling it quits, then back on the road in the morning. We arrived home Tuesday, around 3:00 pm. It was great to cross the Ohio River and even better to be home!!!

Kyle is doing well and happy to be home. Big sister Madison is a HUGE baby hog, and even woke up for Kyle's 4:00 am feeding this morning to help Daddy! Kyle is connected to a portable monitor only when he is sleeping during the night. The monitor checks for Kyle's breathing and heart rate. The only time the alarm has sounded, was a result of a loose connection. We are so proud of Kyle; he made great strides the past 2 weeks since his eye surgery. It is impossible to describe how elated we all are to be home; finally.....the 4 month roller coaster ride has ended. PRAISE GOD!!!

Kyle came home weighing 5 lb 9 ozs and is 19 inches long (@ birth - 1 lb 6 ozs and 11 inches). As Jennifer stated in a previous posting, we will definitely keep updating the blog as frequently as possible. We can never express our gratitude enough, for all of your prayers and encouraging thoughts during this entire experience. Thank you for sharing with us this blessing that the Lord has bestowed on us!

In Christ Alone,
Joe, Jennifer, Madison and Kyle

Going home...

"You turned my wailing into dancing; you removed my sackcloth and clothed me with joy." Psalm 30:11

Heaven sent...homeward bound!!! What a great Father's Day gift! Just a quick note to let you know we will be heading back to Ohio today, we are hoping to have Kyle discharged by 11:00 am. Joe arrived in Orlando last night and then we spent the night in the nesting room with Kyle. Except for our lack of sleep, everything went great!!!

While Kyle will ultimately decide how far we get, our plan is to drive to at least Charlotte, North Carolina before stopping for the night. Tomorrow our drive will resume and we should be back in Ohio by late evening...and reunited with Madison! Praise the Lord!

Thank you so much for all of your thoughts and prayers over the last few months!!! "This is the day the Lord has made; let us rejoice and be glad in it." PSALMS 118:24

Much Love,

Jennifer, Joe, Madison and Kyle

June 16, 2007

"I will turn their mourning into gladness: I will give them comfort and joy instead of sorrow." Jeremiah 31:13

Things are still going great...we have been busy making arrangements for our departure on Monday. Before the preemies are discharged, they must pass a car seat test. The baby sits in his/her car seat and is hooked up to a pulse oximeter that measures the level of oxygen in the babies blood. Apparently the way a baby is positioned in a car seat can be challenging for their breathing. I am pleased to say Kyle received his car seat test yesterday and passed with flying colors.

As you may know, Kyle is going home on a monitor that will alarm if Kyle has an apnea or breadboard spell (where his heart rate drops below 80 or he forgets to breath). Yesterday, I met with the medical company supplying the monitor for training. The alarm, when it sounds, is soooooo loud. It is designed so that you can hear it from anywhere in the home, whether you are awake or asleep... it sounds very similar to a smoke alarm. Thankfully, Kyle only has to wear it while he sleeps.

Doesn't Kyle look cute in his scrubs!?! They were a gift from my friend Breanne. The man holding Kyle is the head neonatologist at the hospital. We thank God everyday for the amazing NICU staff at Orlando Hospital. May God continue to give the NICU staff the strength, courage, understanding, and intelligence to do the wonderful work they do.

Much Love,

Jennifer, Joe, Madison and Kyle

June 14, 2007

"You have made known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand." Psalm 16:11

Kyle was allowed to go outside today!!! We went on a field trip called "Fun in the Sun" ...which basically is that the babies are allowed to go outside to the hospital garden with a Child Life Specialist from the hospital. Kyle was able to share this first experience with his "girlfriend Rylee"...unfortunately Kyle slept through his first play date, but Mommy had lots of fun.

Well, it looks like Monday is going to be the BIG DAY!!! Unless something goes wrong, we will be leaving the hospital Monday and heading home to Ohio. Joe is flying down to Orlando on Sunday. When he arrives we are going to have infant CPR training and then we will spend the night at the hospital in the nesting room. Because Kyle is going home on the heart/oxygen monitor and is considered a chronic baby, we have to spend the night with Kyle in our own room at the hospital, without complications, and we will then be discharge sometime on Monday. God is indeed good!!!

We will always be thankful for all of you who have prayed to the living God on our behalf. We believe still that God has been more than evident through it all. His presence has been all that we have needed and ever needed. His power and wisdom to work in the midst of this entire past four months is beyond our understanding. We praise His name for the good that has come as a result. God has been gracious to give strength and comfort, He alone deserves our worship and adoration. Even in the time of distress, heartache, uncertainty and tragedy, He remains constant and faithful. We have been to both ends of the emotional spectrum and through it all He has been there.

“May our Lord Jesus Christ himself and God our Father, who loved us and by His grace gave us eternal encouragement and good hope, encourage your hearts and strengthen you in every good deed and word.” 2Thessalonians 2:16 NIV

In Christ,

Jennifer, Joe, Madison and Kyle

June 13, 2007

"Don't let anyone look down on you because you are young, but set an example for the believers in speech, in life, in love, in faith and in purity." 1 Timothy 4:12

Kyle has been breathing without any assistance for 54 hours now! He has to do it for a couple more days before the doctor will be comfortable discharging Kyle without oxygen assistance. At worst case Kyle can come home on a very low flow nasal canula until his lungs get stronger. Kyle is still taking his bottles like a champ. He has been drinking 1 1/2 ounces of breastmilk every three hours. Today his feedings were changed to "ad lib" which means as long as Kyle eats a minimum of 6 ounces every twelve hours, he can eat it whenever he would like. So far Kyle has done great and finished his 6 ounce requirement within 6 hours.

In response to the questions that were left on the comments section over the last couple days:

• How will we get home to Ohio? If you had asked me last week I would have said that we would be flying back to Ohio. However, since Kyle came off of the oxygen the doctors changed their mind and would prefer us to drive home. Joe will be flying to Orlando early next week and then the three of us will drive home once we get the green light from the doctors.


• Does Kyle cry like a newborn baby or has he gotten adjusted to life in his crib/isolette to the point where he is less expectant of being held all the time? Kyle loves to be held and promptly cries the minute he is put down! The hard part about this is that from 10am-12pm and 6:30pm -7:30pm we are not allowed in to visit Kyle. His nurses make sure he has everything that he needs medically, but are not able to just spend time holding him. Lately when I arrive after after the nursey has just been closed, Kyle's face is bright red from crying and it just breaks my heart. Actually, I forgot to mention something relating to this last week. If you remember Kyle was having issues with his blood pressure being high. Kyle's doctor was stumped as to why, so Kyle was examined by a Nephrologist (pediatric blood pressure specialist) on Friday. As it turns out, Kyle is fine, just stressed out. The specialist said that often times we under estimate the intelligence of babies. In the begining, Kyle was not very aware of his surroundings, but now he senses that there is more to life than what he has been able to experience. Much like you and I would be ready to leave the hospital after such a prolonged stay, they said that Kyle is ready to move on as well. I am not sure if this is the official name, but the specialist said basically Kyle has "NICU stress." He came to this diagnosis based on Kyle having some good blood pressures mixed in with his high blood pressure. Originally they thought his high blood pressure was related to his kidneys, but the specialist said if this was the case then his blood pressure would always be high. Anyways, sorry to turn a simple question into such a long explanation!



• Is Kyle still on a heart monitor? Yes, Kyle is on a monitor that will alarm if Kyle's heart rate drops below 80 beats per minute or if the oxygen level in Kyle's blood drops to a certain level. There are three probes, each about the size of a quarter, that stick to Kyle's chest...which is why they weren't appereant in the pictures. Because of his BPD (Bronchopulmonary Dysplasia/Chronic Lung Disease) Kyle will be going home on the monitor but this is hopefully something that we won't need for long.



• Are we going to continue the blog once we go home? Yes, we plan to still update the blog, although not as frequently, once we are home. I think this blog has turned into Kyle's baby book and his story certainly doesn't end here!

I don’t think I have ever been so happy! I was scared to death at his birth but I am overwhelmed with joy and contentment right now… I wonder what I will be like the day he rolls out from the hospital!

Much Love,

Jennifer, Joe, Madison and Kyle

June 11, 2007

"You have made known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand." Psalms 16:11

Notice anything different in the pictures of Kyle??? He was taken off the nasal cannula today and since 9:00 am he has been breathing all on his own!!! It is hard to imagine that last Monday Kyle was having eye surgery, back on the vent (for the surgery), receiving IV fluids and only allowed one bottle a day. Now, just 7 days later...he is breathing on his own and taking every feeding by bottle. Not only being offered a bottle each feeding, but the little piggy is finishing all eight bottles...which is why his feeding tube was also removed today. For the first time ever, I was able to gaze at my precious baby boy without some sort of tube taped to his face. God is so good!

The retina specialist examined Kyle today and said that everything looks better than he had even hoped. The "bad" cells are just about gone and in their place healthy ones are emerging. He will examine Kyle one more time before he is discharged, and after that we'll follow-up with a retina specialist in Ohio. Kyle also had his hearing test today and passed.

Things are certainly looking good for us right now...Kyle's doctor even said today that there is a chance that Kyle could come home sometime next week!!! We are trying to be cautiously optimistic but we are just so excited! I was first admitted to the hospital 18 weeks ago and am so ready to begin the next chapter of this journey. I don’t have the correct words to even begin to express my feelings to you. I am so excited, relieved, blessed, nervous, scared to death, joyful and over-whelmed all at the same time.

Thanks again for your thoughts and prayers, we would not have been able to make it without them.

Much Love,

Jennifer, Joe, Madison and Kyle

June 10, 2007

"He will keep in PERFECT PEACE all those who trust in Him, whose thoughts turn often to the Lord! Trust in the LORD GOD always for in the Lord Jehovah is your everlasting strength". Isaiah 26:3-4

Kyle is doing GREAT with his bottles!!! Yesterday his bottles were increased to every other feed, which means he was allowed to try and take four bottles a day. He finished all four of the bottles he was offered and therefore today his doctor wrote an order for Kyle to be able to take every feeding by bottle! If Kyle does not finish all of the contents of a bottle, what is left will be fed to him through the feeding tube in his nose...but, so far he has finished every bottle. Today Kyle's nurse said, "based on her 26 years experience in the NICU" if Kyle continues doing what he is doing, he will probably be released in about 2 weeks! Praise God!!!

"...The LORD replied, my precious, precious child, I Love you and I would never leave you! During your times of trial and suffering when you see only one set of footprints, it was then that I carried you." Footprints has always been my favorite poem and I get chills when reading it. Throughout this journey I have felt as though I am living IN the poem. I have always understood that God does carry you in times of trial but fortunately I have been a very blessed Child Of God and not lived through to many serious trials. During this time, I have been carried by God, family, friends, neighbors, my sisters, my parents, my wonderful husband and all of you reading this blog.. Suffering, depression and JOY all have a whole new meaning and I will never take those words lightly again.

Blessings,

Jennifer, Joe, Madison and Kyle

June 8, 2007

To his disciples Jesus declared: "Have faith in God... I tell you the truth, if anyone says to this mountain, ‘Go, throw yourself into the sea,’ and does not doubt in his heart but believes that what he says will happen, it will be done for him" (Mark 11:22-23)

Kyle completed his Swallow Study on Friday. The testing was done downstairs in the XRAY department and Kyle was thrilled to leave his little corner in the NICU for awhile ...this is only the second time he has left the NICU, the other time being Monday for his eye surgery! He was so alert as he was rolled through the halls of the hospital and just took everything in...his eyes were darting around like he didn't want to miss a thing. I guess after spending 15 weeks in the NICU he was ready for a change of scenery! Okay, about the Swallow Study...Kyle was hooked up to a XRAY machine and given ONE suck from a bottle of barium. The machine was pretty cool and allowed us to watch the barium leave the bottle and travel through Kyle. The first bottle was a very thin mixture of barium. Kyle took literally one suck of the barium and it began to go into his airway. This was considered an aspiration. From here, they thickened the barium a little and gave the bottle to Kyle again. He did great and did not have any more aspirations. I am not truly convinced that Kyle had aspirated in the first place for a couple of reasons. First, Kyle is on a strict schedule where he is fed every three hours, but because of a scheduling conflict with the radiologist, Kyle's feeding was delayed so he was extra hungry...as soon as the bottle was put in his mouth he took a big drink. Plus, his bottle was filled with barium as opposed to milk. I think it may have been somewhat of a surprise when he had that first taste...kinda like if we were expecting a sip of Diet Coke and there was barium in the can instead we would probably cough as well! Anyways, it is a very easy fix, for now they will just add a substance called "Simply Thick" to Kyle's bottles. We were warned that it may take a little time for Kyle to catch on to drinking the thickened milk because it is harder work. Same analogy as I used with the Frosty before...it would be much harder work for us to drink a thick Frosty through a straw compared to a Diet Coke. I am so pleasantly surprised though...Kyle finished both bottles he was offered on Friday, so today his feeds were increased to 4 bottles a day and he finished ALL four bottles!!! The next step is to allow him to try taking a bottle for every feeding, which I am hoping the doctor will recommend in the next couple days. Finishing his bottles is the only challenge we have left before Kyle will be discharged!

Mandy, one of our favorite nurses in Level 3 bought Kyle the outfit he is wearing in the picture above and her grandma knitted him the hat he is wearing. The staff at Florida Hospital is awesome and I have really formed a special bond with several of the nurses during our stay here. As much as I am ready to return to Ohio, I will miss my NICU family in Orlando.

Speaking of my NICU family...Please say a prayer for my friend Breanne and her little girl Rylee. Rylee had her weekly eye exam on Wednesday and her ROP progressed to Stage 3. The specialist was consulted and he said there is a pretty good chance Rylee will need surgery next week. Rylee will be reevaluated on Sunday or Monday. Please keep little Rylee in your prayers for her ROP to not progress any further and that everything will go smoothly if she does have to have surgery.

Much Love,

Jennifer, Joe, Madison and Kyle

P.S. Kyle was being so funny when I took the bottom picture. He kept staring at his hand as if he just realized it was there!

Due Date

"Now choose life, so that you and your children may live and that you may love the LORD your God, listen to his voice, and hold fast to him. For the LORD is your life." Deuteronomy 30:19-20

Kyle had a great day and seems to be fully recovered from his surgery. He was moved back to Level 2 last night. His oxygen is back down to half a liter and since last night Kyle has been on room air (21%). Full feeds were resumed today and his IV was also removed. Kyle is still on one bottle a day until he completes the Swallow Study, which is scheduled for tomorrow morning. Hopefully once this test is completed, Kyle's bottles will be increased.

Joe flew back to Ohio this afternoon. It was great to see him, we have had so little time together over the last few months. Last night we had date night, probably our last one for quite some time! Joe is such an amazing father, he is a natural with Kyle. I know Kyle is going to miss his Daddy now that he is back in Ohio.

Today is my official due date! Joe mentioned something on the blog about my due date being earlier in the week, but my official due date was June 7. Joe was a little fuzzy on the date because I had calculated a due date based on conception. Since Kyle was a "test tube baby" and conceived in a petri dish at the Cleveland Clinic, there wasn't any question on the time of conception! I calculated my due date based on conception but my first ultrasound revealed that my due date was June 7. Boy, am I babbling about nothing!

Anyways...my official due date is today. Since Kyle's birth 15 weeks ago, I can't help but think of how different things could have been, but lessons often arise in our trials. One that has stood out very clearly for me is how easily distracted I could be by my own pursuits and good intentions. I was always on the go...working full time, taking care of my family, serving at my church, volunteering at Madison's school, etc. My mindset was "Get the job done and look ahead to what you have to do next." As I grew more scattered, more divided, and more exhausted, I lost sight of God's plan. "Let us fix our eyes on Jesus, the author and perfecter of our faith" (Hebrews 12:2). This trial has helped me to refocus on Him. I praise God that this journey has helped me to pay attention to what really matters...being centered on Him!

Much Love,

Jennifer, Joe, Madison and Kyle

June 5, 2007

"Yours, O LORD, is the greatness and the power and the glory and the majesty and the splendor, for everything in heaven and earth is yours. Yours, O LORD, is the kingdom; you are exalted as head over all. Wealth and honor come from you; you are the ruler of all things. In your hands are strength and power to exalt and give strength to all. Now, our God, we give you thanks, and praise your glorious name." 1 Chronicles 29:10-13

Kyle is still resting comfortably in the level 3 NICU, where he shares a room with 2 twin girls. We expect him to be in level 3 at least another day or so, but are in no hurry to move to level 2. It's more peaceful in the 'twins' room versus 10 to a room in level 2. This morning Kyle was still a little groggy and his eyes were puffy as noted by the pictures above.

Kyle has had a busy evening.....Mommy arrived in town and both Kyle and Mommy are elated to be reunited! Kyle was so happy to see Mommy, that he stayed awake for 4 hours! Madison is staying with her best friend Reese for a couple days until Daddy gets home on Thursday. Kyle received a blood transfusion, it has been nearly a month since his last 'tomato juice'...hopefully this will be his last. Kyle has resumed feedings. Kyle is currently on half feedings....He receives 24 cc's every 3 hours and they will increase the feedings by 3 cc's every 6 hours...and should be back to his full feeds (42 cc's) within 48 hours. Tonight Mommy was able to give Kyle his first bottle since his surgery.

Today Kyle's girlfriend Rylee was scheduled to have her retinal eye exam, we pray that her ROP has not progressed and that she will not need laser surgery.

Kyle's weight is up to 5lbs. 6 ozs. (2545 grams). We believe most of the gain overnight is a result of all the IV fluids he has been receiving since his milk was suspended.

Your faithful prayers continue to be heard!

Much Love,

Joe, Jennifer, Madison and Kyle.

June 4, 2007

"He is your praise; he is your God, who performed for you those great and awesome wonders you saw with your own eyes." Deuteronomy 10:21

Kyle's laser eye surgery went well and he is resting in the level 3 NICU. The surgery lasted about an hour an a half. I spoke with the retinal specialist after the surgery and he said everything went well. We will know more in a week or two. There is no telling at this stage whether or not Kyle will need to wear glasses.....to be honest, glasses are the least of our concerns.

Kyle is off the vent, praise God!!! However, he was 'weaned' off in an unusual manner. When I came back to the hospital after shift change, Kyle's nurse was doing his assessment. We tried to put his gel pillow under his head, when he extubated himself by coughing up his tube. It wasn't a pretty sight. Yet, it turned out to be a blessing, since the nurse practitioner recommended to put Kyle on nasal cannula. They started him off on the 1.0 liter nasal.....they have since switched him to the 1.5 liter, but he is doing great. I pray Kyle will never have to be on the vent again.

That's all I have for now....Kyle and Daddy need to get some rest. Thank you all for you continued support and prayers.

In Christ Alone,

Kyle, Madison, Jennifer and Joe

Eye Surgery

"Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord: And the prayer of faith shall save the sick, and the Lord shall raise him up" James 5:14-15

Just a quick update...Kyle's surgery is at 2:00 pm today. Joe is such a good Daddy, he arrived at the hospital at 5:00 AM to accompany Kyle on his trip back to the Level 3 NICU, which was delayed and did not end up occurring until 8:00 AM. Anyways, Kyle is resting peacefully, his IV has been started and they are just waiting for the surgeon to arrive.

PLEASE PRAY!!! Pray that the Lord gives knowledge and skill to the surgeon, doctors and nurses who will be attending to Kyle today. Please also pray that the Lord will be with Kyle in the coming hours as He has been with him since his life first began.

We'll update you this evening how the surgery went. Thanks to all of you so much!!!

God Bless You,

Jennifer, Joe, Madison and Kyle

June 3, 2007

"The LORD is my strength and my song; he has become my salvation. He is my God, and I will praise him, my father's God, and I will exalt him." Exodus 15:2

Kyle gained a little weight today, up to 5 lbs 3.2 ozs.

Kyle is still receiving 42oz feedings every 3 hours. Twice a day his feedings are given via bottles...and yesterday, he took almost all of his bottles for Daddy! His first bottle he took 40 cc's and his next one he drank 37. Kyle is getting the hang of sucking, swallowing and breathing all at the same time.... (and I think Daddy is getting the hang of it also). Any amount that Kyle does not take in the bottle is given to him through a bolus feeding method. The bolus feeding is administered via a syringe connected to Kyle's feeding tube, but lets gravity do all the work. Kyle has very little residual from his feedings and hasn't had any spit-ups. Also, Kyle's feeding tube has been taken out of his mouth and placed in his nose. Hopefully this will help with the bottles....I can imagine how difficult it would be to drink from a pop bottle if I had a straw in my throat...

It has been very therapeutic for me (and I hope for Kyle also), spending time together feeding, cuddling and rocking!

Tomorrow (6/4) would have been Jennifer's due date....It saddens me to think how different things could have been.

We can not thank everyone enough for all of your thoughts and prayers!!

Much Love,

Joe, Jennifer, Madison and Kyle

June 1, 2007

"There is surely a future hope for you, and your hope will not be cut off." Psalm 23:18

Kyle is 102 days old and the roller coaster ride continues. We found out that he has a few small calcium particles in his kidneys, but too small to be considered stones at this point. The doctor believes that these deposits will dissolve and not need to be 'passed'; apparently these deposits are common with babies that are given diuretics.

We still do not know the reason for Kyle's high blood pressure of late. If Kyle's blood pressure continues to be over 100, a consultant will be brought in to run some tests to try and shed some light as to the cause. According to doctor, Kyle might need to be on some medication to keep his blood pressure under control. This is also something that can correct itself over time.

Today, Kyle was supposed to have something done called a 'swallow study'. This test is administered by placing a colored die in Kyle's bottles. As Kyle is feed, x-rays are taken during the feeding to determine whether the milk is going in the esophagus and/or if any is going in his lungs which can cause him to aspirate during his feedings. X-rays are also performed after the formula starts to digest to very if reflux is occurring.

The swallow study was put on hold today because the retina eye specialist needed to see him at the same time the study was to be performed. We found out this morning that Kyle needs to have lasik surgery on his eyes because the ROP has become more active. Twenty years ago, babies in Kyle’s position would eventually go blind. The retina specialist believes they have caught this early enough for a successful outcome. We won’t know anything for 1-2 weeks after the surgery if the ROP has stopped spreading and whether any scare tissue has developed. A downfall of the surgery is that Kyle could loose some peripheral vision and possibly need to wear glasses. The surgery is scheduled for Monday. Unfortunately, Kyle will need to be put back on the ventilator a few hours before, during and hopefully only a little while after the surgery. Because of this Kyle will be moved back to the level 3 NICU until he is off the vent. We are asking for your prayers for a successful surgery and a quick recovery for Kyle.

On a happier note, Kyle’s weight is 5 pounds, 2.5 ounces. Yesterday I was able to give Kyle a bottle for the first time….and tonight I get to give him a bath!

Sometimes it is hard to understand God's plan, but His love for us is constant. We are so blessed.

In Christ,

Joe, Jennifer, Madison and Kyle