Wednesday, May 30, 2007

May 30, 2007

"The eternal God is your refuge, and underneath are the everlasting arms." Deuteronomy 33:27(NIV)

The past couple of days have just been so so for Kyle. On Saturday his blood pressure was high, and we thought that it had been due to the stress of moving rooms. However, his blood pressure has continued to trend up since then so the doctors began running some tests today. They said it could be nothing, or it could be something with his kidneys. Because of this, they took a urnine sample and did a kidney ultrasound. We should have the results tomorrow.

In addition to the high blood pressure, Kyle's oxygen requirements have gone up a little since Saturday. Kyle had been requiring anywhere from 23% - 25% oxygen for the past couple weeks, but since Saturday he has not tolerated anything under 30% very well. The doctors say this may be another sign that his body is under some sort of stress.

Kyle is still taking two bottles a day. He usually finishes one bottle completely, his second bottle however has been a different story. We won't move up to three bottles a day until he finishes the two he is already given. Which is no big deal, at least now we know he can suck, swallow and breathe at the same time. That has been a big accomplishment for Kyle!

Joe and I are swapping places for a week. I flew home early this morning and Joe leaves for Orlando tomorrow morning. It is so hard for me to be away from Kyle...especially now that he is so much more aware of his surroundings. Fortuneately, he is in great hands at the hospital. It is shocking to me, but some of the babies do not have visitors. The nurses take great care of the babies, but are not able to spend time just loving on them. There are volunteers, called Cuddlers, that come to the hospital to just hold and cuddle with the preemies that do not receive much attention from mom or dad. When I heard this, I instantly thought of my Aunt Sandra. While I have never had the pleasure of meeting her before, from the posts she leaves on the blog, she sounds like she would be the perfect person for such a job! Anyways, since Joe and I were not able to be with Kyle today, I contacted the Cuddlers group and they were going to visit Kyle and spend some time holding him.

From the bottom of our hearts, thank you once again for all of the thoughts and prayers over the last few months. Your love and support have meant the world to us!

God Bless You,

Jennifer, Joe, Madison and Kyle

Monday, May 28, 2007

Memorial Day

“And whoever welcomes a little child like this in My name welcomes Me." Matthew 5

Kyle did awesome with his bottles!!! He had his first one last night and drank half of it. Prior to his feeding, the nurse warned me that preemies don't usually take much the first few times they are given a bottle, but eventually they'll get the hang of it. Because Kyle has been sucking diligently on a pacifier for the past month without getting any milk, last night Kyle was given a bottle with a very "slow flow" nipple. This was so that he didn't suck to hard and choke on a mouthful of milk. The nurse put water in a bottle with the slow flow nipple and let me try it so I would understand how hard it was to get anything from it. My friend Breanne had a good description...she said it is like when you get a Frosty from Wendy's and try to drink it from a straw before it begins to melt. It would be a lot of work to finish the whole Frosty at that consistency, so imagine how much work it would be on such a little guy. Anyways, the nurses were very impressed that Kyle was able to drink half the bottle considering the challenge.

Today at 11:00 am, Kyle had his second bottle. Since he handled last nights bottle so well, without any choking, they decided to let him try a bottle with a standard nipple. He did great and drank the WHOLE thing!!! Kyle will receive one bottle at night and one bottle during the day. Once he finishes everything in both bottles in a 24 hour period, his bottles will be increased to three a day. Again, once he finishes all three bottles over a 24 hour period, he'll move on to four bottles a day and so on until he finishes 8 bottles a day and then...we can go home!!!

I was frustrated earlier in the week when Kyle wasn't allowed to at least try the bottle. For anyone that has kids, you know how fussy they can get at feeding time until they finally get their bottle. Imagine if you just couldn't give them the bottle they wanted and had to just watch them suffer. Kyle was getting so upset and was rooting around and crying for a bottle, but was never allowed to receive one and fulfill that natural instinct. As his mommy, I have had to watch Kyle suffer so much over the last few months. The bottle thing seemed like a pretty simple way to pacify him and I hated that I couldn't help him out. God stepped in with His impeccable timing and sent the doctor to see Kyle at just the right time yesterday. Thank you Lord!

I hope everyone has a great Memorial Day...I know I have! :)

God Bless,

Jennifer, Joe, Madison and Kyle

Sunday, May 27, 2007

May 27, 2007

"Sons are a heritage from the LORD, children a reward from Him." Psalms 127:3

Hooray...Kyle is now a proud member of the 5 pound club!!! After hovering at 4 pounds 15 ounces for the last three days, Kyle finally hit 5 pounds (2280 grams) tonight. His height is 17 1/4 inches. He is getting so big!

The other good news for the day is that Kyle gets to try a bottle tonight. Kyle's doctor did his daily examination on Kyle today at the perfect time...right before a feeding was due! Before feeding time, Kyle is a huge wiggle worm, sucking anything that comes into his path while he is rooting around for a bottle. Which, by the way, is how he ended up pulling his feeding tube out for the past four days! Anyways, this is the first time the doctor ever saw Kyle before a feeding was due. He took one look at him and wrote an order for Kyle to start taking two bottles a day. The first bottle was supposed to be at 8:00 pm, but his nurse was to busy to try it then so she said we'd shoot for his 11:00pm feeding. I can't wait!

"But the eyes of the Lord are on those who fear him, on those whose hope is in his unfailing love, to deliver them from death and keep him alive in famine. We wait in hope for the Lord; he is our help and our shielded. In him our hearts rejoice, for we trust his holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in you." Psalms 33:18-22

The phrase unfailing love means so much to me and it means so much to God because He used it 27 times in the Psalms alone. I'm so thankful for his unfailing love because mine has gone through periods of fading or divided love, but Gods love toward me has been constant. It is what we all desire and what God desires to give us, his children - his unfailing love. I look at Kyle and Madison with a mothers love and it amazes me that Gods love is so much deeper than our earthly love.

Much Love,

Jennifer, Joe, Madison and Kyle

Saturday, May 26, 2007

May 26, 2007

"...and a little child shall lead them." Isaiah 11:6

Today is a very bittersweet day. Early this morning, Kyle was moved from the Level 3 Newborn Intensive Care Unit to the Level 2 unit. He is now what is considered a "feeder and grower" which is basically a preemie that just needs to eat and get bigger before he can go home. Very good news from a medical standpoint, but bittersweet as Kyle is now in a big room with about 10 other babies. For the past 11 weeks, we have been in our own private room. It was an adjustment today, for Kyle and I, to now be in a room with 10 babies, 3 nurses and various other parents. Today Kyle's blood pressure has been high and his oxygen level was up to 30% (it was 23% yesterday)...which his nurse said is a result of his new surroundings and the noise level. With 10 babies living in the same room, one is ALWAYS crying! The level of care is a little less also since the babies are not as critically ill. In Level 3, the nurses care for just two babies at a time...Level 2 they care for four babies at a time. Anyways, although it is going to take some getting used to, this is a great move for move for Kyle - we're one step closer to being able to go home!

For the past two days, Kyle's weight has been 4 pounds 15 ounces...we are so close to 5 pounds! To me, Kyle looks HUGE, at least compared to how tiny he used to be. I was even thinking he may be able to fit into his newborn size clothes, but we're not quite there yet. In the pictures above, I have laid a newborn size sleeper next to Kyle so you can get a little perspective on his size compared to a full-term newborn baby. The average size of a newborn is 7 pounds 6 ounces so we still have a little ways to go, but we'll get there! By the way, someone mentioned to me the other day that they wished there was a way to see a bigger picture of Kyle. Most of you have may have already figured this out, but if you click on a picture of Kyle you can see it blown up. Just don't do it to pictures of me...I don't need my wrinkles magnified any more than they already are!

We thank God as he continues to fit each piece of our puzzle in place. "May the Lord of peace himself give you peace at ALL times and in EVERY way. The Lord be with all of you." 2 Thessalonians 3:16

Much Love,

Jennifer, Joe, Madison and Kyle

Friday, May 25, 2007

May 25, 2007

"Although he was a son, he learned obedience from what he suffered, and, once made perfect, he became the source of eternal salvation for all who obey him...." Hebrews 5:8,9(NIV)

Kyle was seen by a retina specialist and the diagnosis is early Stage 3 ROP(Retinopathy of Prematurity). The specialist is going to see Kyle again next week, but as it stands now, surgery is not necessary. Praise God!

Kyle's oxygen flow was decreased today from 1 liter to .5 liter. This is a big milestone in the NICU. There are four requirements a baby must meet in order to go home. They need to be on a maximum oxygen flow of .5 liter, weigh at least four pounds, maintain their body temperature and take 8 bottles a day. Kyle has three of the four down!. Now, we just need to give him a chance to at least try a bottle.

Kyle's feedings were compressed again today. Every three hours, he now receives 42 cc's in 30 minutes (instead of over an hour). There are 30 cc's in an ounce, so Kyle gets about 1 1/2 ounces each feeding. When Kyle was two weeks old, he was only taking 1 cc, which is equivalent to 1/5 of a teaspoon. He has come such a long way! The past THREE days, Kyle has pulled out his feeding tube before mealtime. I think it is in protest to being deprived of a bottle! :)

Once again, thank you all for your prayers and support!

Much Love,

Jennifer, Joe, Madison and Kyle

Thursday, May 24, 2007

May 24, 2007

"For you, O Lord, are my hope, my trust, O Lord, from my youth." Psalm 71:5

Okay prayer warriors, we need you again! Kyle had his weekly eye exam yesterday and it showed that his ROP (Retinopathy of Prematurity) has quickly progressed from Stage 1 and is now at Stage 3 in his left eye (right eye is Stage 2). The stages of ROP, numbered 1 to 5, describe what’s going on in the eye, with 1 being very mild problems and 5 being the worst. In stage 3, the ridge has abnormal blood vessels growing off the top of that ridge into the clear jelly that fills the eyeball. These abnormal blood vessels can pull the retina off the inside surface of the eyeball - a retinal detachment. Stage 4 is partial detachment, while stage 5 is total detachment. Once detachment starts, the problems are vastly greater, and blindness can occur. Laser surgery can be done, usually at Stage 4, to stop the abnormal growth and therefore prevent retinal detachment. Kyle's eye doctor has referred him to a retinal specialist who will be evaluating Kyle in the next day or so. PLEASE PRAY THAT KYLE'S ROP CLEARS UP ON IT'S OWN!!!

Kyle has had a busy couple of days now that his various therapy sessions have all started. He is receiving occupational therapy 3 times a week, music therapy 3 times a week and speech therapy everyday. Yesterday he happened to have all three sessions scheduled so it was a busy day for a such a little guy. His occupational therapist says that everything with Kyle is "perfect"! Music therapy was started yesterday. For his music therapy, his pacifier is connected to a machine that monitors his sucking. If he sucks correctly, he is "rewarded" by a lullaby that plays. Kyle did wonderful and had the lullaby playing for the entire session. The bottom picture was taken during music therapy - the yellow objects in Kyle's crib are the speakers. Speech therapy, although slow, is also going well. Kyle is doing everything correctly according to his speech therapist. Because of this, he was allowed to do something they call "finger feed" today. A thin wire is connected to Kyle's pacifier and if he sucks on his pacifier, a small amount of milk goes into Kyle's mouth. He handled it great and was allowed to "drink" 5 cc's. They will continue the finger feeds for about a week and then let Kyle try a bottle. Now that I am over my initial shock/disappointment, it does not seem like such a big deal. In the big scheme of everything, a couple extra weeks in Florida is not such a big deal.

Our big guy is now 13 weeks old! We could not have gotten through this time without your prayers and support. The Lord has definitely given us comfort through all of you.

God Bless,

Jennifer, Joe, Madison and Kyle

Tuesday, May 22, 2007

May 22, 2007

"Then they would put their trust in God and would not forget his deeds but would keep his commands." Psalm 78:7

Unfortunately, things did not go to well with the speech therapist yesterday. With-in the first minute of the meeting the therapist decided Kyle was not ready to try a bottle. Needless to say, I was very disappointed. Kyle was sound asleep and the therapist picked him up and gave him a pacifier. When she did this, his oxygen level dropped a little (from 95 to 89, still well with-in the normal range). As soon as this happened, she said he was not ready because he could not maintain his breathing while sucking on a pacifier. I pointed out to her that his oxygen usually fluctuates some when he is first picked up, but she said that him not liking to be touched is another indication that he is not ready for the bottle. I tried explaining that Kyle loves to be held - he has since we were first allowed to pick him up, and that he does fine on a pacifier, but her mind was already made up.

The speech therapist came back today and before her 11:00am appointment with Kyle, I woke him up, changed his diaper and was holding him when she arrived. I figured that if I was sound asleep and a stranger came and picked me up and stuck a pacifier in my mouth, it would take me a minute to figure out what was going on as well! Anyways, it seemed to help some, as she said Kyle did much better today. He did not have any problems maintaining his oxygen levels and sucked just fine on his pacifier. Because he was doing better, she dipped his pacifier in milk and observed his reaction. She said he did everything right, so her plan is to try dipping his pacifier in milk for a few more days and see how he handles it. She couldn't give me an exact time as to when she thought he might be ready for a bottle, but said it would most likely be in a couple weeks. I asked what the worst case scenario is if we try giving him a bottle now and if he doesn't handle it well, we stop...she said that this may give him a negative impression of a bottle and lead him to never want to take one.

I am trying to remain positive, we have had so many blessings, but it is frustrating sometimes. It is hard when the nurses and I have been around Kyle all day for the last few months and we think he is ready, then a speech therapist comes in and after 5 minutes makes a determination that will prolong our stay in Florida by at least a couple weeks. My due date is June 7 and that was always the date we were told to strive for him coming home. As it stands now, he most likely will not have even had his first bottle by then. Once he does take his first bottle, it is a very slow process until they work up to all bottle feeds. First they start with one bottle a day, and after a few days they'll increase to two bottles a day and so on until he is taking 8 full bottles a day. Sorry for venting, I just miss being home so much and was a little caught off guard by this set back.

"Therefore do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For after all these things the Gentiles seek. For your heavenly Father knows that you need all these things. But seek first the kingdom of God and His righteousness, and all these things shall be added to you. Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble." (Matthew 6:31-34)

Although there is no shortage of things to worry about, Jesus's message offers a new perspective. He reminds me that our heavenly Father knows my needs (much better than I do, by the way), and He will give me what I need from day to day. Sorry again for venting, I just need to remind myself to seek God's kingdom first and make it my central focus, and all of these other things will fall into proper perspective.

Much Love,

Jennifer, Joe, Madison and Kyle

Sunday, May 20, 2007

May 20, 2007

"We were under great pressure, far beyond our ability to endure, so that we despaired even of life...but this happened that we might not rely on ourselves but on God...On him we have set our hope that he will continue to deliver us, as you help us by your prayers." 2Corinthians 1:8b-11a

We are reminded by Paul as he writes to the Corinthians, that we are to rely not on ourselves and what we bring to the table, but to rely on God and Him only. I like these verses because I have had my anxious moments throughout this ordeal - but in every one either through His word or encouragement of family and friends God’s promises have been true. My faith has been strengthened and I see each day it is God’s power in me and He deserves all the glory.

After Kyle's bath today he`was having some trouble maintaining his body temperature, to the point where it was effecting his breathing. He was put under a`warming lamp to help him stabilize and it seemed to do the trick. Pretty minor stuff compared to all we've been through! The only other news is that he is scheduled to have an evaluation with a speech therapist tomorrow to determine if he is ready to try a bottle. Please pray for good results as this is the main area we need to work on before coming home!

In response to Aunt Karen's questions...
- As far as Kyle's eyes go, he has developed something called ROP. Retinopathy of Prematurity-ROP occurs when abnormal blood vessels grow and spread throughout the retina, the tissue that lines the back of the eye. These abnormal blood vessels are fragile and can leak, scarring the retina and pulling it out of position. This causes a retinal detachment. Retinal detachment is the main cause of visual impairment and blindness in ROP. Kyle is showing signs of Stage I — mildly abnormal blood vessel growth. Many children who develop stage 1 improve with no treatment and eventually develop normal vision. They will check Kyle again in 1 week to see what the status is on this. If it progresses to stage 3 or 4, laser surgery can be done to correct the problem but we are praying it clears up on its own.
- To check the residual in Kyle's stomach...using a syringe connected to his feeding tube, they suction out the contents of his stomach. Kyle is fed 39 cc's every two hours, and typically he has 1-2 cc's left to be digested when they check, which is well with-in the normal range.
- Kyle has not had a hearing test yet, but from what I have observed, everything seems fine. When I talk to him, he'll turn his head in my direction.

Yesterday I went to a luncheon in honor of my friend Breanne and her baby Rylee. Kyle and Rylee were born just 5 days apart and both babies were 15 weeks early so we have really gone through this whole experience together. Breanne has been such a blessing the last few is`amazing the bonds that can be formed with perfect strangers because they know exactly what you are going through in this overwhelming world they call the NICU. Rylee is an absolutely adorable little girl. The nurses have taken to calling Kyle and Rylee the "King and Queen of the NICU" because they say they both so spoiled already! Anyways, the bottom picture is of Breanne and I yesterday at the luncheon.

We are praising God for His goodness!

Much Love,

Jennifer, Joe, Madison and Kyle

P.S. Kyle was so happy when I took the picture of him above. He was waving his hands (which is why they are blurry) and smiling. It was cute!

Saturday, May 19, 2007

May 18, 2007

"Train up a child in the way he should go, and when he is old he will not depart from it." Proverbs 22:6

What can I say, today was another good day! Kyle was doing so well with his feedings being moved to his stomach that the doctor decided to begin compressing his feeds over two hours. Whereas before Kyle would receive 12 cc's of milk each hour of the day, now he receives 36 cc's of milk in two hours, then his stomach has an hour to digest the food. After the hour of digestion is over, his stomach is checked to see how much, if any, residual (food) is left in his stomach. So far today, Kyle has had very minimal residual left each time. When his nurse was changing out his feeding once today, she put a couple drops of milk in his mouth to see how he would do and he loved it! He kept wanting more and each time she gave him some he would swallow it just fine. The nurse said this was a good sign. Hard to imagine Kyle is 3 months old and this was the first time he had "food" in his mouth!

On Tuesday Kyle was moved to a real crib and as such we now have a place to hang a mobile. I wasn't sure if he would even notice it, but he actually really seems to enjoy it. He watches it very intently, and seems to focus on one animal at a time. With the mobile spinning, eventually he'll loose track of the animal and then his eyes start darting around the room looking for it, which is what Kyle is doing in the bottom picture. It is so fun to watch as he becomes more and more aware of his surroundings!

In response to Aunt Sandra's questions on the comments section...The interview ended up being completely different than what we expected. As it turns out, there was a movie premiere in Orlando on a documentary called Heart of an Empire: The Life and Times of the Fighting 501st. The documentary is based on a Star`Wars charity that visits children and their families who are facing some sort of crisis. In conjunction with the movie premiere, local papers and a local TV station were doing a story on the group and wanted to take pictures of them "in action", hence the visit to the Ronald Mc Donald house. We were the family that was featured. There were about 15 Star Wars characters at the Ronald Mc Donald house, and, while on camera, they announced that Madison was the special girl they came to see. They asked her to come up because they had brought her some gifts, but she was so afraid she refused! Madison is someone that is to frightened to sit on Santa's lap so you can imagine her fear with Darth Vader! Joe had to finally pick Madison up and hold her while she received some Star Wars toys from them. A couple of the characters took off their masks to show her they were just in costume and she eventually began to relax and enjoy herself. Afterwards they asked us some questions about how this sort of visit helps to cheer us up, which was the "interview" portion. Anyways, I misunderstood the story, and thought it was going to be about the Ronald Mc Donald house, but it ended up that it was about this Star Wars charity who happened to visit the Ronald Mc Donald house. I am not sure how much we were featured in the story but it should be posted online soon. When it is, I'll let everyone know the link.

We are amazed at our God and His people. Thank you from the bottom of our hearts for your thoughts and prayers.

In Christ Alone,

Jennifer, Joe, Madison and Kyle

P.S. My date is (or was supposed to be!) June 7. :)

Thursday, May 17, 2007

May 17, 2007

"When anxiety was great within me, your consolation brought joy to my soul." Psalm 94:19

Another good day! Kyle is doing great on the nasal cannula, his oxygen has been down to 23% most of the day. His oxygen pressure is on 2 liters, which the doctors will begin to slowly wean soon. Kyle's feeding tube was moved back to his stomach (from the intestines) yesterday and he has tolerated this move just fine. The plan is to give him a couple more days to get used to this and then this weekend begin compressing the amount of time he receives his feeding.

I am really enjoying the nasal cannula, almost as much as Kyle! He would get so upset when they would put the CPAP gear on, he just hated it and his poor nose was raw. Without the cumbersome CPAP gear and the confinement of the isolette, I am able to pretty much pick Kyle up whenever I want. This is such a fun time! :)

Madison and Joe left Tuesday night as Madison had to return to school (her last day is June 8). We had a great visit. With Madison being able to be more involved with Kyle's care now that he is getting bigger, she was much more tolerable of the frequent hospital visits. In fact, she is a baby hog! We were also able to get out and do something fun every day. One day we took her friend Sarah to Sea World, we also went to Disney Quest, Blizzard Beach, Magic Kingdom, Animal Kingdom and swimming. We crammed a lot of fun into five days! I was trying to make her visit extra special, as Madison has had a lot of family activities at school lately that she has had to attend without mom. Muffins with Mom, an Art Show/Ice Cream Social, Family Picnic and a zoo field trip have all occurred this week. She has been a little bummed that I have not been able to be part of this stuff like I normally would. We are truly blessed, however, that Joe is such a wonderful Dad and husband. There are not many guys out there that could handle playing mom and dad while still working full time. He is amazing and we love him so much!

God bless you all.

Much Love,

Jennifer, Joe, Madison and Kyle

May 16, 2007

"This is the Lord's doing, it is marvelous in our eyes." Psalm 118:23

Kyle turned three months old yesterday! In some ways it hardly seems like three months could have passed since his birth, and in other ways it's been an eternity. Lots of worry and stress, lots of waiting, and, the most difficult thing of all, lots and lots of uncertainty. But, all along it has been in God's competent hands. He has taken our pain and our doubt and brought it all together for good!

Kyle is still on the nasal cannula and doing fabulous. I think we are finally over the worry of whether or not he will go back on CPAP. The doctors must be confident as well, as they have moved his feeding tube from his intestines to his stomach (we were told they would not do this until he was stable and going strong on nasal cannula). As long as he tolerates this okay, the next step will be to move him from continuous feeds to bolus feeds. Currently he is fed 12 cc's of milk through his feeding tube continuously every hour. When he moves to bolus feedings, Kyle will consume 36 cc's in a specified amount of time, such as a half hour. Much like you or I would eat a whole meal at one sitting. The med team will slowly wean Kyle off the continuous feeds. The continuous feeds are much easier on a baby for a couple of reasons. First, it helps with the reflux (if you remember Kyle had milk in his lungs before because of his reflux) and second, it is harder on the babies lungs to breath when they go from having an empty stomach to a full stomach in a short amount of time. Anyways, it should be about a week to ten days before he is on bolus feeds. At this time, he will be ready to try taking a bottle. I can't wait!

Kyle is 4 pounds 6 ounces today...he has gained 3 pounds since he was born! On Monday, he measured exactly 16 inches, which is 4 1/2 inches "taller" than when he was born. A new addition to his hospital room is a baby swing, which we tried out this afternoon. Kyle seemed to like it, and I loved it! I have been doing some work for the office lately, and the swing will be perfect for me to gaze at him while I am working.

God says, "My angels will always protect you"(Psalm 34:7) and you have all been Kyle's angels. We can not thank you enough for the prayers and support over the last three months.

Much Love,

Jennifer, Joe, Madison and Kyle

Monday, May 14, 2007

May 14, 2007

"Through Jesus, therefore, let us continually offer to God a sacrifice of praise—the fruit of lips that confess his name." Hebrews 13:15

Kyle continues to make great strides....Kyle has been on nasal cannula since 10:00 am this morning and is doing great! His weight is up to 4 lbs. 2 ozs. and his feedings have been increased to 12 cc's every hour. Please pray that Kyle's breathing will not regress so that he will not need to go back on CPAP. I think Jennifer and I hate the CPAP as much as Kyle does....Because the nurses are not expecting Kyle to go back on CPAP, they were able to take 1 of the tubes out of his throat that was used as an air vent when Kyle was switching back and forth from nasal to CPAP.

Daddy was able to hold Kyle for 2 hours this morning. Also, Kyle seems to be more aware of his surroundings. When I came back to the hospital this evening he was wide awake, looking all if he was waiting for a visitor.

The next milestone for Kyle would be to pull the feeding tube up to his stomach. A while back, Kyle's feeding tube was placed in his intestines when it was realized that he was having issues with reflux. Kyle still has a hernia, but it doesn't look as swollen as it used to and it hasn't spread to his other side. He will still need surgery at some point, but will probably occur after he is home and will likely be performed as outpatient surgery.

Thank you again for everyone's support and prayers!

Much Love,

Joe, Jennifer, Madison and Kyle

Sunday, May 13, 2007

Mother's Day

"A wife of noble character who can find? She is worth far more than rubies. Her husband has full confidence in her and lacks nothing of value. She brings him good, not harm, all the days of her life." Proverbs 31:10-12

Kyle is doing well and continues to switch between the nasal cannula and CPAP every 6 hours. Kyle's respitatory therapist is going to recommend that they increase the amount of time Kyle spends on nasal cannula. It is so nice to see Kyle with clothes on. Madison is already a great big sister...or 'Sissy' as we have been calling her. Jennifer and I are beginning to worry that Madison will be 'hogging' Kyle when we eventually get him home to Ohio....dressing him up in outfits and push him around in her doll strollers.

Yesterday members of the Fighting 501st Legion, a worldwide organization of dedicated Star Wars fans, visted us at the Ronald McDonald House. These dedicated men and women were in town at the Orlando Science Center for a documentary, Heart of an Empire: The Life and Times of the Fighting 501st. The documentary is based on all the smiles they provide to sick escape, a little vacation, when the parents and the child don't have to think about anything that's going wrong, or the worst that can happen.

Today we got to spend a little family time together with Madison....we went to Disney's Blizzard Beach and had a blast on all the water rides and slides.

I would like to wish a Happy Mother's Day to all the Mom's and a big thank you!!!!

In Christ,

Joe, Jennifer, Madison and Kyle

Saturday, May 12, 2007

May 11, 2007

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these." Matthew 19:14

Another good day...I feel like I am running out of things to convey to everyone! This blog began as a way to keep everyone updated on Kyle's health...lately things have been going so well, it has become more about me babbling about new experiences with Kyle. Tonight is no different! We spent a great evening as a family. Madison was allowed to give Kyle a bath, then she dressed him in his first outfit. It was so neat for Joe and I to watch Madison interact with Kyle. She is going to be a GREAT big sister, and a huge help!

Kyle's doing good switching between the nasal cannula and CPAP. Today his oxygen was even down to 21% throughout the day!!! The doctors haven't said anything about when they might put Kyle on nasal cannula full time, but it shouldn't be long now.

WKYC, which is the Orlando area ABC station, is doing a story on the Ronald McDonald House. They want to feature a family that is staying at the house and we have been chosen to be that family. Tomorrow afternoon the news crew will here to interview us. It should be interesting!

What a perfect Friday night! As I climb into bed, I am thanking God for His faithfulness, power and love.

Much Love,

Jennifer, Joe, Madison and Kyle

P.S. Aunt Lynn - Thank you for the outfit Kyle is wearing! :)

Thursday, May 10, 2007

May 10, 2007

"Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God. Being fully persuaded that God had power to do what He had promised.” Romans 4:20-21

It has been an exciting couple days. First, Kyle hit 4 pounds!!! Which means, he was moved to a "big boy" crib today. No more isolette! Another milestone of hitting 4 pounds is that, starting tomorrow, we are allowed to put our own clothes on him. Madison and Joe flew down tonight, and as the big sister, Madison insists on picking out his first outfit. We'll definitely post pictures of it tomorrow.

Kyle continues to make improvements with his breathing. Tuesday his PEEP was lowered to 5 and he has tolerated it wonderfully. Today the doctor switched his breathing to 6 hours on CPAP, 6 hours on nasal cannula. They'll try this for a couple days and then move him to nasal cannula completely. Between the open crib and his nasal cannula, we have so much more access to him! Before, we had to "schedule" holding sessions with his nurse. It was such a big ordeal to take him out of his isolette because they had to disconnect all of is various monitors and the breathing machine. With the open crib, we can now just pick him up whenever we want, at least why he is on the nasal cannula. Plus, it does not have to be for a minimum of an hour as before. Madison, along with Joe and I, had always feared that she would not be able to sit still for that long with him. When Madison arrived tonight, she was allowed to hold him for the first time...we shouldn't have worried, after an hour and a half, we had to make Madison give him up!

Thanks be to God for you all.

God Bless,

Jennifer, Joe, Madison and Kyle

Tuesday, May 8, 2007

May 8, 2007

"Has not my hand made all these things, and so they came into being?" declares the Lord. "This is the one I esteem: he who is humble and contrite in spirit, and trembles at my word." Isaiah 66:2

The days seem to be stacking higher and higher in favor of Kyle. Today was another good day and we praise God for it. Kyle's oxygen was down to 22% today! The goal is 21% and then he will be breathing "room air." Kyle is still on CPAP, except for when we kangaroo...which we did for 4 hours tonight. Originally the doctor had wrote the order to allow Kyle to wear nasal cannula during kangaroo time for up to 2 hours a day. Kyle was doing so well, the doctor changed his order today to "as tolerated" during kangaroo time. I am sure Kyle would have tolerated it longer than 4 hours, but Mommy can only sit in a chair without moving for so long! The doctor also lowered Kyle's PEEP today to 5. PEEP is basically the pressure of the air flow, and a PEEP of 4 is equivalent to the nasal cannula. My hope is that by this weekend he'll be on the nasal cannula full time.

Kyle is 11 weeks old today. Hard to believe his due date is still a month away! He has come so far, especially in the last couple of weeks. His weight today is 3 pounds 15 ounces...he is so close to 4 pounds! The two bottom pictures above are of Kyle at one week. The top picture was taken today during his therapy session. You can really get a sense of how much he has grown when you compare his size relative to the nurses hands in each of the pictures.

We are continuing to thank God for His mercy and His grace. Grace that goes beyond my human comprehension. Grace that even in spite of my sins and my short comings, covers me over with love and forgiveness. I thank Him each day for His amazing grace, without it I am nothing.

In Christ Alone,

Jennifer, Joe, Madison and Kyle

Monday, May 7, 2007

May 7, 2007

"And He took the children in His arms, put His hands on them and blessed them." Mark 10:16

I got to give Kyle a bath today! Surprisingly, he really enjoyed it and behaved the whole time. He has only had one other "tub" bath, for which I was not present, so this is another first for me. After bath time, we kangarooed for a couple hours while wearing the nasal cannula and Kyle did great issues at all using this breathing machine. In fact, the only problem we have is when our two hours are up and he has to go back on the CPAP... he gets so angry! The nurse he had today was so sweet and even suggested that I talk to the doctor about Kyle going on nasal cannula full time or at the very least extending the time he is allowed to spend on the nasal cannula. We'll see tomorrow how the doc feels about that, I don't want to rush things if Kyle is not ready, but at the same sense, he is so uncomfortable wearing the CPAP gear.

Our big guy is up to 3 pounds 13 ounces today. Soon he'll be a member of the 4 pound club! Once he hits 4 pounds, he'll be moved out of the isolette and into a crib. Once this happens we're also allowed to bring in clothes for him to wear. It won't be long now! His length was measured today and he is 40 cm or 15 3/4 inches.

"Praise the Lord, O my soul. I will praise the Lord all my life; I will sing praise to my God as long as I live...Blessed is he whose help is the God of Jacob, whose hope is in the Lord his God, the Maker of heaven and earth, the sea, and everything in them - the Lord, who remains faithful forever." Psalm 146:1-2; 5-6

We marvel at God's faithfulness. He is and always will be here for us. Please know the God of Jacob, the same God that we serve and worship this very day. Our hearts still choose to say...blessed be the name of our Lord!

Much Love,

Jennifer, Joe, Madison and Kyle

Sunday, May 6, 2007

May 6, 2007

"Always be joyful and never stop praying. Whatever happens, keep thanking God because of Jesus Christ. This is what God wants you to do." 1 Thessalonians 5: 16-18 CEV

Today was such a fun day with Kyle and we praise God for it! He kept doing cute things, at least his mommy thought they were cute. First, he was smiling and smiling! I doubt that they were genuine smiles (his nurse said they could be or he could just be exercising his mouth) as he is so young, but none the less, he kept smiling when I was talking to him and it just melted my heart. He also kept doing this thing with his pacifier. While he sucks on it, he'd hold it with both hands and eventually he'd end up pulling it out of his mouth. He would still have a hold of the pacifier in his hands, but he would stick his tongue out and root around trying to find it. He would get so mad looking for it, and here it was in his hands the whole time. I'm easily amused!

Kyle is doing great on CPAP, his oxygen level was even down to 25% today. We did kangaroo care last night and today. Yesterday, Kyle did it on CPAP as his respiratory therapist was able to rig something so that the alarm didn't ring. Tonight, Kyle did it on the nasal cannula and did awesome! He really seemed to enjoy the freedom the nasal cannula offers compared to the CPAP. For the first time he could actually lift his head up and switch sides while laying down. It was cute to seem him move around and then snuggle back in to get comfy. Doesn't seem like much, but it has to be annoying for him to always have some contraption attached to his head...the top picture above was taken after we kangarooed and Kyle still had the nasal cannula on, the other is wearing the CPAP gear. It's a big difference.

In regards to Kyle being transferred to Akron Children's would be done via an air ambulance. These are private fixed wing aircrafts that are equipped with oxygen and all the monitors Kyle needs. A nurse would accompany him on the flight as well. Unfortunately, we received some disappointing news Friday from insurance as they denied our request to have him transported home. When Kyle was born, Joe spoke with our insurance company and they said when the time comes, it would be covered. The doctors are saying anytime after Tuesday Kyle will be ready to travel but it doesn't look like it is going to happen. We are going to appeal the insurance decision and are praying that it ends up being covered. Otherwise, Kyle will come home directly to our house via car (too many germs on a commercial flight) when he is discharged completely from the hospital, which we are expecting to occur in about 4 - 6 weeks.

God bless you all.

In Christ,

Jennifer, Joe, Madison and Kyle

Saturday, May 5, 2007

May 5, 2007

"Now may our Lord Jesus Christ himself, and God our Father, who loved us and gave us eternal comfort and good hope through grace, comfort your hearts and establish them in every good work and word." 2 Thessalonians 2:16-17

Thankfully, the last couple days have been quiet for Kyle. He (as well as I) have been enjoying time with Grandpa and Grandma Nash. Kyle is still going strong on the arabella CPAP machine...It has been ten days since he has been off the vent. Praise the Lord!!! His oxygen has been right around 30% (the goal is 21%) most of the time and his PEEP has been 6 (the goal is 4). The doctors haven't said anything yet about when they will begin to ween his PEEP.

I have not Kangarooed with Kyle since last Saturday. The CPAP machine is very "touchy"...anytime Kyle moves the slightest bit, or even opens his mouth, a little air escapes him, and an alarm on the CPAP rings. Most of the time Kyle is doing just fine, but the machine can not detect this. Anyways, it made for some annoying moments for Kyle (and me!) during our last Kangaroo session. Since this time, I have only held Kyle in a blanket, rotating turns with my Dad. I think the skin to skin care that Kangaroo offers is good for Kyle, but the nurses have kind of swayed me against it due to the touchiness of the CPAP machine. Today I asked special permission from Kyle's doctor to allow me to kangaroo with Kyle using the nasal cannula machine. The nurse didn't seem to think this was a good idea, but the doctor overruled and wrote an order for me to be allowed to try it for two hours a day. My first session will be tonight. I am praying it goes well and I don't end up regretting opening my big mouth! Sometimes it is hard to balance my maternal instinct with the nurses expertise.

I haven't really said anything about my trip home last week. I kept very busy, I went in to the office each day, worked on Kyle's room, and reconnected with Madison. Highlights of our time together were "adopting" a baby for Madison and the Father Daughter dance at school. There is a Lee Middleton Doll nursery in Hartville where kids can go and pick out a baby they would like to adopt. The "store" is set up like an actual baby nursery in a hospital. Madison peered though a glass window and looked at the various babies before picking the one she would like to adopt. After picking out the baby, the "new mom" is whisked into the nursery and has to put on a hospital gown and then is taught how to take care of the baby. The picture above is Madison learning how to properly change a baby's diaper. We have a running joke with her that this will be her official job when her little brother comes home! Another highlight of my trip was a Father Daughter Dance at Madison's school. I was allowed to help chaperon the dance and therefore got to tag along to the dance with them. It was a lot of fun.

While it was wonderful to be with family and friends I haven't seen in awhile, I was a little disappointed in coming home. You always think "there is no place like home", especially after having been gone for so long, but it really didn't feel like home. I told Joe it reminded me of when you go away to college (or move out of your parents home) and then come back to visit, while it is nice and comforting, it isn't really your home anymore. With Joe and Kyle in Florida, that is how it felt. I do not think I'll feel complete until the four of us are together as a family.

God continues to teach us as we go through this time. He continues to show His mercy and His love. He continues to stretch our faith. He continues to make us what He wants us to be...if we are willing to let Him work. We combine our prayers with yours for each of us to keep trusting in Him.

In Christ Alone,

Jennifer, Joe, Madison and Kyle

Friday, May 4, 2007

May 3, 2007

"Yet you brought me out of the womb; you made me trust in you even at my mother's breast. From birth I was cast upon you; from my mother's womb you have been my God." Psalm 22:9-10

Kyle had a big day today. This afternoon he began having some A's and B's (where he stops breathing and his heart rate drops). His nose has been very irritated/swollen the last few days because of the harsh prongs of the CPAP. This afternoon it got to the point that Kyle was so bothered by the sores in his nose that it was interfering with his breathing. Although they usually slowly wean the babies from CPAP to nasal cannula, because Kyle's nose was so sore, they decided to try him on nasal cannula today. We were very encouraged because Kyle did GREAT...for about seven hours. Then, his little body just pooped out. They now have him on yet another breathing machine, which is called an arabella. This machine is a little different in that Kyle has a mask over his nose area, as opposed to the prongs up his nostrils. They have to rotate the arabella every six hours with the CPAP because this machine, while gentler on Kyle's nose, irritates the skin around the baby’s nose with the constant air pressure. But, at least this will give his poor nose a break and hopefully allow it to begin healing. We're a little bummed that his lungs are finally able to handle the CPAP, but his nose isn't! It seems like there is always a catch 22 in the NICU.

The pictures above were all taken today so you can get an idea of the different breathing machines Kyle has been on throughout the day. The top one is the arabella, the middle is the nasal cannula and the bottom is the CPAP.

God continues to give strength and support through His grace. He is sustaining us each and everyday. Without Him we would be lost.

Much Love,

Jennifer, Joe, Madison and Kyle

Wednesday, May 2, 2007

May 2, 2007

"Great is the Lord and most worthy of praise; his greatness no one can fathom. One generation will commend your works to another; they will tell of your mighty acts. They will speak of the glorious splendor of your majesty, and I will meditate on your wonderful works." Psalm 145:3-7

We are praising God continuially. Every time we see Kyle increase in any area we give thanks. Every day we spend with him is a blessing. We can not fathom His greatness but we know He is worthy of all our praise.

Kyle continues to do great on CPAP. His PEEP (air pressure) is still on 6 (the goal is 4) and his oxygen has been between 29% and 33%. Throughout the day and night Monday, after they lowered his PEEP to 6, Kyle had a few "A's and B's." He has receovered nicely and has not had any since, but the doctors are going to continue to go slow on lowering his PEEP to give Kyle suffcient time to adjust. Another part of the NICU shuffle, now that Kyle is on CPAP, is "A's and B's," apeneas and bradycardias. Apneas (A's) are episodes when the baby forgets to breathe. These are often followed by bradycardias (B's), when the heartrate drops below 100 or stops beating all together (Kyle's normal heartrate is around 150). A's and B's are a standard part of the preemie experience. Their brains aren't mature enough to regulate breathing, so occasionally they just stop. Usually they'll start again on their own, but if they don't a little alarm goes off and the nurse will either stimulate the baby by patting his feet or chest, or will give him manual breaths by bagging him. He has had bradycardias (verb: he has "bradyed") a few times when he was just mad about something, usually when the nurses were suctioning him. Sounds serious, doesn't it, spontaneously forgetting to breathe and then stopping your heart! But the nurses refer to "A's and B's" casually, in the same tone of voice you might use if discussing, say, "hangnails and papercuts." A's and B's are just part of life for preemies. Luckily the monitors catch them right away, and the nurses are always just a step or two away when they happen.

The doctors are continuing to look for signs of the CMV "attacking" Kyle...typical places of attack are a baby's brain, liver, eyes and/or lungs. Yesterday he had a head ultrsasound and thankfully everything came back fine. The enzymes in Kyle's liver are normal, and all of his eye exams have been good. The only area where the doctors have a question about is his lungs...the CMV could have caused his bouts with pneumonia, but just as easily, the vent could have been the source of pneumonia. Right now, the doctors are waiting on the results of the quantitative CMV test that was done last Thursday. Once they have this, they will take all of the data they have collected relating to his CMV to an infectious disease specialist to determine if Kyle should receive treatment. The medication that is used to treat CMV has some serious side effects, so they will only give it to him if they feel that the CMV is going to cause some long term damage that might be avoided with medication. Please pray for a positive outcome.

We thank you again for all the comments and prayers. God bless!!

In Christ Alone,

Jennifer, Joe, Madison and Kyle

Tuesday, May 1, 2007

Kyle's Room


I wanted to show you what Mommy did last week while she was home. We can't wait for you to come home!!!!


Mommy, Daddy and Madison