Wednesday, June 27, 2007
Friday, 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
Wednesday, June 20, 2007
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
Sunday, June 17, 2007
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!
Saturday, June 16, 2007
Friday, June 15, 2007
Wednesday, June 13, 2007
- 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!
Jennifer, Joe, Madison and Kyle
Tuesday, June 12, 2007
Monday, June 11, 2007
Sunday, June 10, 2007
Thursday, June 7, 2007
Wednesday, June 6, 2007
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!
Joe, Jennifer, Madison and Kyle.
Monday, 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
"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
Sunday, 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!!
Joe, Jennifer, Madison and Kyle
Friday, 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.
Joe, Jennifer, Madison and Kyle