February 27, 2008

Joe was trying to get the kids to smile by

making strange noises...Rylee didn't quite get his sense of humor!

Can I have a taste?

Yep...this is my girl!


Kyle and Rylee at 12 months...

Kyle and Rylee at 4 months...they've changed so much!

"I will be glad and rejoice in your love, for you saw my affliction and knew the anguish of my soul." Psalm 31:7

.

Reunited and It Feels So Good...Kyle and Rylee were able to have their “second date” in the hospital garden! It was SOOOOO good to see Rylee and her mom Breanne. Rylee is an adorable little girl, and although it is difficult to tell from the pictures, she is such a happy baby who smiled so easily for everyone at the hospital. She is so smiley in fact, she has been nicknamed “Smiley Rylee”. It was neat for me to watch Kyle and Rylee interact together during our visit to the garden...they were very curious about each other (and the grass!). Such a change from the first time we were able to bring them to the hospital garden. Both were still in the NICU and Rylee was even on oxygen at the time. They have both come so far, we are very blessed.

I’ll update more when we return from vacation. Thanks for checking in on us…

God Bless,

Jennifer, Joe, Madison and Kyle

Happy Birthday!

Kyle,

You have brought such joy to our lives, we can not even begin to imagine a life without you. You are an amazing, perfect little guy...we are so proud of you!

Happy 1st Birthday!!!

Love,

Mommy, Daddy and Madison

P.S. The video below is of Kyle's 1st year. He has come so far!!!

February 17, 2008

What's this???

Umm...not to bad.

Yummy...

...and messy!

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

Yesterday was a great day! Pattie Cakes (Joe's mom) and Grandma Dottie (my mom) came over to celebrate Kyle's birthday with us. Kyle had his very own "smash" cake and LOVED it! I was not sure how he would do with it, as he has not had any "table food" yet, but as you can see from the pictures above, Kyle dug right in. We have been so blessed with such a happy, easy going little guy...who will be turning one in a couple days!

Much Love,

Jennifer, Joe, Madison and Kyle

Valentine's Day!

"This is how God showed his love among us: He sent his one and only Son into the world that we might live through him. This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins. Dear friends, since God so loved us, we also ought to love one another." John 4:9-11

Doesn't Kyle look so cute in his pictures...not just any pictures - his ONE YEAR pictures! Our little man is going to be one on Wednesday, I can hardly believe it. I am so excited, not just for his birthday, but because a few days later we will be heading to Florida. I miss everyone there so much and I can't wait for them to see how big Kyle has gotten. Speaking of which, during his RSV appointment last Thursday, Kyle weighed in at 15 pounds 9 ounces. Still a little peanut, but growing steady. There really aren't any other updates to report, although Kyle has learned a couple new "tricks". First, he will give "high fives" to Madison. He won't do it for Joe or I, but EVERY time Madison says "high five Kyle" he raises his right hand to hers. Our other new adventure...this morning when I went in to get Kyle up, he was completely turned around in his crib and somehow his head was at the opposite end of the crib from where he slept. I'm not sure how he managed this one, as he sleeps on an inclined positioner made to help his breathing that is sort of difficult to get out of. Plus, he does not roll from his back to his stomach. However he did it, he looked awfully proud of himself and as he greeted me with the BIGGEST smile.

Happy Valentine's Day everyone!!!

Much Love,

Jennifer, Joe, Madison and Kyle

.

P.S. To my Valentine Joe...you are my love, my hero, my best friend and the greatest Dad in the world. I am so proud to be your wife.

February 7, 2008

"He sent forth his word and healed them; he rescued them from the grave." Psalm 107:20

Joe and I have been reflecting back to where we were at this time last year. One year ago today is when I went into labor while we were on vacation. Madison and I had spent the morning in the craft room at the hotel making Valentine cards. Afterwards, we headed back to our room so that we could get changed for the pool, which is when I noticed I was spotting. I immediately called my Obstetrician in Ohio who assured me that some spotting was completely normal and I had probably just overdid it being on vacation. It was recommended that I take it easy until our flight home the next day. I sent Joe and Madison to the pool and I tried to lie down. After about an hour I decided that I was going to the hospital anyways, hoping that they would just tell me it was nothing to worry about.

I left Joe and Madison at the pool while I headed to the hospital closest to the hotel. When I arrived at the hospital the nurse was so nice and chatty and explained it was probably nothing...they get this "all the time with expectant moms overdoing it at Disney." Then while doing my exam, her whole demeanor suddenly changed. She soon discovered that something was very wrong and started frantically paging a doctor, telling them there was an emergency. I was rushed to Labor and Delivery where I was allowed to call Joe. In the delivery room I was hooked up to monitors which indicated that although I could not feel them (yet!) I was having contractions. Once Joe and Madison arrived, the doctor let us know that the hospital was not equipped to handle my situation, but I was in too critical a state to be transferred to a large hospital. They decided to try giving me some medication to see if labor might subside. If they could get the contractions to stop, I would be moved via ambulance to a Level 3 hospital. It was a long day/night, as unfortunately, my contractions began to increase in both frequency and intensity. Soon they were coming every two minutes and we feared that the medicine was not going to help. Thankfully, at around midnight things started taking a turn for the better and I was stable enough that Madison and Joe were able to head back to the hotel.

The next morning I was transferred to Orlando Hospital South. We sort of naively thought that since my contractions had stopped, everything might be okay. Our plan was that Joe and Madison would fly home, and I would wait things out either on bed rest in Orlando or until I was allowed to fly home. At noon I was examined and it was discovered that my water had broke. We were devastated as they went over our chances. My due date was still 121 days away. We had a 90% chance that the baby would die in the delivery room. They told us that IF the baby would survive the delivery that there was a 50% chance he would then die during his NICU stay. If he beat the odds and survived, it would almost surely be with severe disabilities and a very poor quality of life. All of this is happening just two hours before Joe and Madison's flight was scheduled to depart for Ohio! We decided that Joe would go to the airport, and if they would let him take Madison to the gate and get her on the plane, we would allow her to fly home by herself and Grandpa would meet her at the gate at Akron Canton Airport...which is what ended up happening. After getting Madison on the plane, Joe rushed back to the hospital. On top of everything else, on the way back to my room the hospital elevator Joe was riding in broke, and Joe ended up stuck in it for close to half an hour!

My medical records from my OBGYN in Ohio were transferred down to the doctors in Florida and I was admitted to Labor and Delivery. The doctors really felt that I was going to deliver the baby in the next 12-24 hours and we were even offered medication to "speed up the inevitable." Thank God we declined!!! The next couple days were probably the hardest of our lives. I was only 23 weeks along, and although it was not hospital procedure to resuscitate a baby born at 23 weeks, we had the option to have them try. How do you make that decision??? We would ask every nurse and doctor that came to our room what they would do if they were in our shoes. We also were asked if we wanted to hold the baby when he was born, keeping in mind that there was only a 10% chance that he would be born alive. We were told that if Kyle was born at 23 weeks it would be considered a miscarriage, and we would not get a death certificate, but if he was born at 24 weeks the hospital was required to file one. Did we want to have a funeral? What did we want to do with the "body?" We planned for the worst.

Finally, we had two breakthroughs. First, according to my due date I was only 23 weeks and 2 days pregnant...BUT we had conceived Kyle through in vitro-fertilization at the Cleveland Clinic so we knew the exact date of conception, which was September 11, 2006. Joe and I figured out that this technically made me 23 weeks and 5 days pregnant. After verifying this date with the Cleveland Clinic, our doctors in Florida agreed to "age" Kyle by this date. It may have only been a three day difference, but we were at such a critical point that every little bit helped. If I could stay pregnant until 24 weeks, the hospitals whole course of treatment would change and I would then be moved from Labor and Delivery to the Perinatal High Risk Unit where they would strive to keep me pregnant longer. Our second breakthrough happened around the same time when we had a new night nurse named Tammy. Remember when I said that we would ask each doctor or nurse that came in our room what they would do if they were in our shoes – regarding whether or not to resuscitate the baby. Every one had told us, that if they were in our situation, they would not have the baby resuscitated. They said that it would probably be our only chance to hold the baby and so rather than immediately trying to have the doctor revive him (which most likely would not have worked anyways, we were told) we should just hold him and love him as he died. This is what we had decided to do, UNTIL we met Tammy. She told us that she had actually had a baby born at 23 weeks who had survived and was now 9 months old. For the very first time since being admitted, we had hope…!

As I said when I began this blog entry, Joe and I have been reflecting back to where we were this time last year…our heads were spinning! If you would have told us that a year from now we would have a happy, healthy baby boy, we would have been doubtful, yet here we are. We had a great appreciation for Kyle even before his prematurity because I had such a difficult time getting pregnant, so even his conception was nothing short of miraculous to us. But everything now is even more precious to us and we take nothing for granted. We have learned some valuable lessons through this trial and we’ll never be the same. You never know what a day will bring, but God promises never to leave us, nor forsake us. I know I have said this before, but we would not be where we are today without the prayers of so many people - thank you, thank you, thank you! We are truly rejoicing in God’s faithfulness and Kyle’s health.

God Bless,


Jennifer, Joe, Madison and Kyle

February 1, 2008

On May 7, at 11 weeks old, I was finally deemed stable enough to receive my first bath!

"But when the kindness and love of God our Savior appeared, he saved us, not because of righteous things we had done, but because of his mercy." Titus 3:3-5

Kyle is sitting so well we decided to try him in the "big boy" tub and he loved it! He was splashing around and laughing, it was very cute. He's come a long way since his first bath! Another new "trick" of his, he is starting to crawl BACKWARDS. Well, it is more of a scoot, but somehow he can move across the room backwards. Tuesday we had his meeting with his developmental specialist, and towards the end of the appointment, Kyle must have had enough because he literally scooted out of the room!

There isn't much else to report, but I thought I would post a couple pictures of our little man for all you devoted followers of Kyle. We love you!

Have a great weekend!

God Bless,

Jennifer, Joe, Madison and Kyle

January 21, 2008

Kyle playing in his room after bathtime

While getting changed, Kyle likes to "talk" to this monkey

"All your children shall be taught by the Lord,and great shall be the peace of your children." Isaiah 54:13

Kyle turned 11 months old yesterday! It is hard to imagine that our little guy will be one next month. We have debated on what to do for his birthday, as we obviously want to celebrate the occasion, but a big first birthday party just doesn't seem right for him at this point. Plus, parties in Ohio are not as fun in February...too cold! So, we have decided that we are going to have a big bash for Kyle in June when it has been one year since he was released from the hospital and was able to come home to Ohio. As for his actual birthday next month, we are going to celebrate the occasion in Orlando, Florida. I miss Florida so much, especially all the amazing people we met. We already have plans to visit the hospital with Breanne and Rylee, and while we are in Florida, Kyle even gets to go to Rylee's 1st birthday party! I am so excited!!!

Kyle is growing up and developing very well. He can now sit unassisted and play with his toys. While sitting, he can lean all the way forward and twist to either side to pick up toys without falling over. While he is not crawling yet, he pivots around in circles to get to different toys. It'll be only a matter of time before he's on the move. Kyle is very vocal, though not yet talking. (Although Daddy swears he heard Kyle say Da-Da yesterday!) Kyle babbles and grunts to us to get our attention. Sometimes during these "conversations" he gets a real serious look on his face like he's telling a very important story.

Last week Kyle had his monthly shot for RSV. At the appointment, he weighed in at 14 lbs. 14 oz, which means he is probably 15 pounds now. He's roughly in the 5th percentile for weight, even for his adjusted age of 7 months. The doctor isn't worried because he is growing proportionately and consistently. He's just a little peanut still.

Thanks for checking in on us...

God Bless,

Jennifer, Joe, Madison and Kyle

January 7, 2008

Kyle cheering for the Buckeyes!!!

O-H! I-O!

Go Bucks! Big night in the Kupiec household as the Buckeyes vie for a National Title. Hopefully, things will turn out better for Ohio State than they did last year. Whatever happens in the game, I'm sure Joe will just be happy that he gets to watch this years game with his son!

Much Love,

Jennifer, Joe, Madison and Kyle

Happy New Year!

"Therefore, if anyone is in Christ, he is a new creation; old things have passed away; behold, all things have become new." 2 Corinthians 5:17

.

What a year it has been!!! Words can not describe how grateful we are to everyone that has been praying for our family over the past year. Throughout this entire ordeal, we have felt God holding us in the palm of His hand. We have been overwhelmed by the care and concern shown to Kyle and to our family over the past year. Your prayers have been so appreciated and we know they have been a part of Kyle’s miraculous recovery! When I look at Kyle now, it is hard for me to imagine that he once weighed just 18 ounces. I am amazed by the accomplishments he has made, he truly is our miracle baby. I can't wait to see what the Lord has in store for Kyle in 2008!

.

We had a great Christmas. Kyle seems to be a social butterfly already and loved all the family gatherings. As far as gifts go, he was more interested in trying to eat the wrapping paper and bows than in actually opening his presents.

.

Last week Kyle got his first tooth! Poor little guy had an ear infection one day and the next day he cut his first tooth. Not knowing he had an ear infection, we took Kyle to the doctor because he would not stop crying, which is very out of character for Kyle...he is ussually such a happy baby. Needless to say, between his tooth and ear infection he was in a lot of pain. The antibiotics cleared it right up and Kyle was back to himself the next day.

.

I hope that you all have a wonderful New Year!

.

God Bless,

.

Jennifer, Joe, Madison and Kyle

Christmas

"For unto you is born this day in the city of David a Saviour, which is Christ the Lord." Luke 2:11

We hope that you all have a wonderful holiday. Merry Christmas!!!

Much Love,

Jennifer, Joe, Madison and Kyle

December 17, 2007

Aunt Katie, Kyle and MadisonPapa Joe, Grandma Angela and Katie with Madison & Kyle

Kyle with Joanna

"Glory to God in the highest, and on earth peace, good will toward men." Luke 2:14

Kyle is feeling much better and recovered from his bout with Bronchitis pretty quickly. Last week he received another RSV shot, and will continue to receive one monthly until RSV season ends in April. His weight is up to 14 pounds, still on the small side, even for his adjusted age, but he is getting there slowly but surely.

Kyle is learning to sit by himself now and each day he is able to sit unassisted for longer periods of time. Last week we received the results from yet another formal evaluation from one of Kyle's Developmental Specialists, this time his Physical Therapist. I am happy to report that this report confirmed the others, Kyle is right on target and doing everything that he should be for his adjusted age. Something a little different about this evaluation, the therapist looked as much at how Kyle's body reacted to certain tasks, rather than if he could just accomplish something. For example, when Kyle stands, is it flat footed or does he put an unusual amount of weight on his toes. Kyle stood flat footed which was a very good sign. Something else they looked for was how easily Kyle could get his foot in his mouth, which given the chance, he loves to have his feet in his mouth! Not something you typically see on a developmental checklist, but these are all areas that could possibly indicate Cerebral Palsy. Thankfully, once again, Kyle did not show any signs Cerebral Palsy.

This past week we had some very special visitors staying with us. Joe's Dad, his step mom Angela and little sister Katie were in town from Las Vegas. Aunt Katie is 6 years old so her and Madison have a blast paling around together. Kyle loved everyone, but definitely had a soft spot for Papa Joe. Any time Papa Joe would even just look at Kyle, Kyle would light up and smile! While they were in town we went to a couple family gatherings where Kyle was introduced to Joe's cousin Stacy's baby girl Joanna. Sounds confusing, huh? Stacy and I were pregnant together, with my due date being June 7th and Stacy's due date being June 9th. We had assumed that we would have our babies around the same time, but, you all know how that turned out! Anyways, it was interesting for me to see a baby born almost exactly when Kyle should have been born. Although Joanna is a little bigger (2 pounds to be exact), developmentally they seemed about the same, which was comforting to me. Anyways, we had a wonderful week seeing everyone and were very sad when it came to an end.

Christmas is almost here and it is definitely my favorite time of year! With all the hustle and bustle of the holiday season though, we are trying to keep our focus on the real reason for the season...and that being the birth of our Lord and Savior...Jesus! He is the greatest gift of all! "And you will have joy and gladness, and many will rejoice at his birth." Luke 1:14

God Bless You and Yours,

Jennifer, Joe, Madison and Kyle

December 5, 2007

Kyle during his Swallow Study - not happy they made

him wear a purple hospital gown! :)

"Behold, a virgin shall be with child, and shall bring forth a son, and they shall call his name Emmanuel, which being interpreted is, God with us." Matthew 1:23 (KJV)

Poor little Kyle has been under the weather. He came down with a slight cold last week and by Saturday it had turned into Bronchitis. When we put Kyle to bed on Friday, he was a little stuffed up, but when he woke up Saturday morning he was wheezing and his chest was retracting as if he was struggling a little with breathing. Infants airways are small to begin with but Kyle's is further complicated by his chronic lung disease, so any type of swelling in his airway makes it difficult for him to breathe. When we took him to the doctors they immediately began administering Albuterol (steroids) through a nebulizer. The pediatrician warned us that this type of treatment typically is not effective until at least 6 months of age, and with Kyle turning 6 months (adjusted) on Friday, she was unsure if it would help. If treatment did not work, they were going to admit Kyle to the hospital for oxygen support. I am so pleased to report that the treatments worked and began helping his breathing right away! So, the doctor sent us home with prescriptions for Albuterol and Pulmicort Respules and nebulizer, which is an electric machine that that turns liquid medicine into a mist that Kyle can breath into his lungs through a face mask. Kyle is doing so much better now! With his complicated stay in the NICU (pneumonia 3 times, CMV, infections, etc.) we really are so blessed that this is the first time Kyle has been sick since he was discharged from the hospital five months ago. God is great!

Kyle had another swallow study done on Thursday. If you remember, Kyle had two of these done in June, one while he was still in the hospital and another the week after he was discharged. We were hopeful that his swallowing may have matured to the point that Kyle could come off of having his formula thickened, but unfortunately, this was not the case. For the swallow test, Kyle is hooked up to an XRAY machine and fed a bottle containing barium. We are able to watch the liquid travel through Kyle. The first suck they gave him was of a bottle that was not thickened at all, which went into Kyle's airway right away. The second bottle was thickened to the consistency that Kyle is currently receiving, which is called a nectar consistency. We were stunned that this to went in Kyle's airway as well! They then moved onto an even thicker consistency (honey), and Kyle did fine with all of the bottle going into Kyle's stomach as it should. So, Kyle now receives his bottles thickened to the consistency of honey. Since this occurred on Thursday, we have noticed a decrease in Kyle's eating, but we're not sure yet how much of this is due to him having a cold and how much is because of the increased difficulty of eating. Poor thing, think how hard it would be to suck honey out of a baby bottle compared to milk! They are not going to repeat the test again for 6 months, so for the time being we'll just have to manage.

.

We also met with an eating specialist and I am happy to report that Kyle is handling his "solid" foods just fine. In fact, during his swallow study they tested him eating Stage 2 baby foods and he did great. I was a little worried because Kyle still does not have much interest in food, but I am relieved that he can physically do everything correctly, we just have to wait for him to develop the desire to want to eat his baby food. Although, the way that mashed fruits and vegetables look, I can't say I blame him much!

.

Where ever you are, thanks as always for your support.

.

God Bless,

.

Jennifer, Joe, Madison and Kyle

Thanksgiving

Madison and Kyle with Linda

Aunt Karen with Kyle

"In every thing give thanks: for this is the will of God in Christ Jesus concerning you." 1 Thessalonians 5:18

The lovely woman wearing the purple shirt in the pictures above is my Aunt Karen, who is in town from Georgia and was finally able to meet baby Kyle on Sunday! Many of you have read Karen's beautiful messages on the comments section of the blog. Since Kyle's birth, she has been one of his biggest supporters and has been responsible for him being on prayer lists across the country. Also included in the pictures is my third cousin Linda, whom I had not seen in over 20 years. She heard about our situation with Kyle and has been praying for him faithfully. Linda and her husband Dan are closely affiliated with the Crystal Cathedral (Robert Schuller) and they in turn have been praying for our family. The Crystal Cathedral even requested that Linda and Dan return to California with pictures of baby Kyle! We know God has been evident throughout this entire situation, but his blessings continue to amaze us. Reuniting long last family is just one more reason we have to praise Him.

Kyle received his first RSV shot last week and will continue to receive them monthly until RSV season ends in April. If you are not aware of RSV, respiratory syncytial virus, you are among the majority. Most people have not heard of RSV, even though nearly every child has had the virus by age two. For full-term babies, RSV typically is not any worse than a common cold, but for preemies, the virus can be quite different. Babies born earlier than 36 weeks are at the highest risk for serious complications like pneumonia, bronchiolitis, and other, sometimes fatal, complications. We are very fortunate that our insurance company has decided to cover these shots, as they are $1300 per month. As such, it is something that is not typically covered by insurance unless there are extenuating circumstances. With Kyle being born at 25 weeks, having such a low birth weight as well as chronic lung disease; he is among the highest risk factors for contracting RSV and developing serious complications. This website offers a great visual comparison of a preemie’s lungs, and therefore why they are not able to fight the virus, compared to the lungs of a full-term baby: http://www.preemiecare.org/LungsTrees03-4.pdf Fortunately, our pediatrician said that since she has begun administering the shots, only one baby has contracted RSV and it was a very mild case.

Every November, you hear about being thankful and grateful for all the blessings in your life. Sometimes you hear the word "thankful" so often that it ceases to have meaning to you. This Thanksgiving, I have definitely viewed the subject of "thankfulness" with a new energy and focus. Of course every day is a good time to be thankful, but we especially show our gratitude to God this year during Thanksgiving time. We are amazed at God’s love and faithfulness. Oh, we knew about it before, but the depth and the vastness of it we are still in the process of comprehending.

Love and Happy Thanksgiving to all!

Jennifer, Joe, Madison and Kyle

November 17, 2007

GO BUCKEYES...Beat Michigan!!!

November 8, 2007

"How great is your goodness, which you have stored up for those who fear you, which you bestow in the sight of men on those who take refuge in you." Psalm 31:19

No news is good news, right?!? Sorry it has been awhile since we have posted, but there really has not been much to report. Kyle is busy doing typical baby stuff, which at this point is not very much! Food has been introduced into Kyle's diet over the last couple weeks. So far, Kyle has tried rice cereal, oatmeal, bananas, applesauce and pears. In the beginning, he really had no idea what to do with the food when it was placed in his mouth, and most of it ended up ON him instead on IN him. Slowly though, he is getting the hang of it. I wish I could say he is enjoying his food, but no matter what we try feeding him, he always seems pretty indifferent to the foods. Really, he could take it or leave it, but the doctor says it is good practice for him to keep at it. Nutritionally, Kyle receives everything he needs from his bottles, which are still a mixture of high calorie preemie formula, safflower oil, poly-visol vitamins and thickener.

Kyle has had two sessions with his Developmental Specialist, Mrs. Brady. I like really like his specialist and her philosophy, which is rather than have an intensive hour of therapy with Kyle every other week, she instead focuses her time on teaching his caregivers how to interact with Kyle during everyday activities. She has taught us different ways to carry Kyle, play with him, sit with him, talk with him, etc. that are all designed to assist with his development. Simple things like when we show him a toy, to hold it above his head which will force Kyle to look up and in turn work muscles in his neck and back he does not typically use. Or, when Kyle is on our lap, to bounce him on our knee which will help Kyle to develop his equilibrium and balance. The specialist is very pleased with Kyle's progress so far, and says that he is doing everything she would want him to and she does not feel there will be any long term problems or complications. Very reassuring for us to hear!

Thank you once again for all the prayers that have been offered up on behalf of our family. We are amazed at our God and His people.

God Bless,

Jennifer, Joe, Madison and Kyle