"Before I was born the Lord called me; from my birth he has made mention of my name." Isaiah 49:1
Yesterday was another great day for Kyle. He is still on CPAP and doing very well. Where the vent actually "breathed" for Kyle, the CPAP just puts a constant flow of air into Kyle's nostrils. There are two settings on Kyle's CPAP machine that can be manipulated/changed according to how well Kyle is doing. One is the concentration of oxygen in the air Kyle receives. Just like when he was on the vent, our goal is 21% (which is the oxygen level in room air you and I breath). Kyle has consistently been around 30% which is pretty good. The other setting on the CPAP is the pressure of this air blowing into Kyle's nose, which is called his PEEP. The higher the pressure of the air, or PEEP, the more help Kyle is receiving. Kyle started last week on a PEEP of 7, and yesterday it was lowered to 6. Afterwards a blood gas was done to see how well his body tolerated it and it came back perfect. The plan is to slowly lower this PEEP until we hit our goal of 4. Once we hit 4, Kyle will be switched to another breathing machine called a nasal cannula that is even less invasive.
Kyle is 10 weeks old today! His weight is up to 3 pounds 7 ounces, which means he has officially TRIPLED in size!!! His length is 15 inches, so he has added just three inches in length. The biggest area of his growth is definitely how he has filled out. When he was first born, he was so skinny that he looked like a wounded bird to us. Joe swore he would never eat chicken wings again! Now, he looks just like a baby should, only he is a miniature version! He is the most precious gift from God.
Grandma and Grandpa Nash are in town for the week so my Dad was able to meet Kyle for the first time yesterday. Papa Nash (as the grand kids call him) was instantly smitten! He was able to hold Kyle, and Grandma Linda got to change his diaper. Kyle welcomed her to the world of boys by peeing all over his bedding during the diaper change! Grandpa didn't seem to mind a bit, as this meant he could hold Kyle again while the nurse switched out his bedding. I am so glad that my Dad was able to meet Kyle and I just can't wait for Kyle to be moved to Ohio where he can be reunited with the rest of the family. When my mom was in Orlando, Kyle was still in his "wounded bird" stage so she missed out on holding him and the other fun stuff.
Enjoy the pictures of Kyle. I typically would post the straw picture today, as it is Tuesday, however, I think Kyle is getting to big for those. In the beginning, I used this as a measurement so that you could see how small he is, but now I am celebrating his growth. The bottom picture of Kyle is at 5 days, where he is only 1 pound 2 ounces...he has come so far!!!
God keeps amazing us with his faithfulness. We are thankful beyond words.
Jennifer, Joe, Madison and Kyle
Monday, April 30, 2007
Sunday, April 29, 2007
“I lift up my eyes to the hills- where does my help come from? My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip- he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep. The Lord watches over you- the Lord is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The Lord will keep you from all harm- he will watch over your life; the Lord will watch over your coming and going both now and forevermore.” Psalms 121
I have had a great day watching Kyle. I have enjoyed every minute of it. Watching him gives me such joy. Kyle has changed so much in the week I was in Ohio!!! First, the most obvious change is that he is on CPAP. Besides just being able to take all of his breaths on his own, the CPAP brought about many unexpected changes. First, it allows us to be able to see his whole face....no more white tape covering part of it! Also, the ventilator separated Kyle's vocal cords so that he was not able to make sound. With CPAP this is no longer an issue, so, for the first time since Kyle was born 9 weeks ago, I have HEARD my baby cry! Little things I never realized I was missing, such as him sneezing, I can now see and hear. With the large tube of the vent out of his mouth, Kyle is also able to take a pacifier now, and he loves it. I spent a good part of yesterday and today holding his pacifier in his mouth...he's not quite coordinated enough to keep there himself, but the minute it pops out he gets so mad.
Another milestone Kyle hit while I was gone was reaching 1500 grams (3 pounds 5 oz.). This is some sort of a milestone in the NICU, as now Kyle does not have to wear the probe that regulates the temperature of his isolette. When a baby reaches 1500 grams, they are considered able to maintain their body temperature for the most part. Since Kyle does not have to wear the skin probe, he is now allowed to wear a hospital gown. Another first for me, seeing him in clothes! However, the best part of Kyle being able to maintain his temp better is that I was able to hold him, wrapped in a blanket, like you would hold a full-term newborn! This is the first time I have been allowed to do so. While kangarooing with Kyle has many advantages, the biggest downside was that I could not see Kyle's face when I held him. I spent five glorious hours this afternoon watching him while I held him.
At the end of today I thought about God watching me, his daughter, and wondering if he had as much fun watching me as I did Kyle. Did my actions make him proud the way I was so proud of Kyle? I am so thankful for the unconditional love God has for me. “Great is the Lord and most worthy of praise; his greatness no one can fathom.” Psalms 145:3. Don’t forget God is watching over you too!
Jennifer, Joe, Madison and Kyle
Saturday, April 28, 2007
"He is your praise, and he is your God, who has done for you these great and awesome things, which your eyes have seen." Deuteronomy 10:21
It has been 48 hours since Kyle started CPAP and he is still responding well to this transition, PRAISE GOD! He gained a little weight, back up to 3lbs. 5ozs. (1500grams) and Kyle’s blood gases continue to come back good also.
It was great to see Jennifer for 2 whole nights!!!! Hopefully this could be the last trip down to Orlando for a while…in hopes that Kyle can be transported home soon…..? Jennifer is anxious to get back to Florida to see Kyle. Her plane leaves this afternoon and I’m sure she’ll go straight to hospital. I’m happy that Mommy will be with Kyle, it has been hard being away from Kyle during this giant step…at the same time we know that he is not alone, we know the Lord has been with him throughout his journey!
God Bless You All,
Joe, Jennifer, Madison and Kyle
Thursday, April 26, 2007
"I can do everything through Him who gives me strength." Philippians 4:13
As of 10 pm this evening, Kyle is still doing well on CPAP….Praise God!!
What a crazy morning it turned out to be. Since my plane was departing at 2 pm, I decided to go to the hospital early to kangaroo with Kyle. After only 30 minutes of cuddling, Kyle’s doctor came in and said they were going to try Kyle on NCPAP. The NCPAP has two prongs that extend through the nasal cavity to provide assistance breathing similar to the ventilator, but at a lower rate. At the same time we also learned that Kyle needed a blood transfusion and would be getting 3 immunization shots as well. The bottom 2 pictures above are Kyle after he was extubated, it was the first time we could see his entire face. The top 2 pictures are Kyle’s NCPAP setup. It was a great feeling knowing that the breathing tube was no longer in Kyle’s throat. At the same sense, it was the first time we could hear Kyle cry. It broke my heart hearing him cry (I’m sure in a couple months I’ll have a differing opinion).
When I was leaving the hospital, Kyle was doing well on NCPAP. I guess after a period of time Kyle became aggravated with the long prongs in his nose and began to get angry and was having a difficult time. The doctors decided to take out the NCPAP and put Kyle on the normal CPAP. Kyle tolerated this change very well and continues to do well….Please pray that Kyle will continue to do well on CPAP!!! There is a possibility that if Kyle is stable on the CPAP for or a week or two, we might be able to transport him to Akron Children’s Hospital, a level 3 NICU in Ohio!!!
In Christ Alone,
Joe, Jennifer, Madison and Kyle
"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you." Matthew 7:7
Just a quick note to let you know that the doctors are going to take Kyle off the ventilator at about 10:30 this morning and try him on CPAP. PLEASE SAY A QUICK PRAY that Kyle's little lungs are strong enough to handle this challenge.
I will keep you posted on how it goes. PLEASE, PLEASE, PLEASE pray!!!
God Bless You,
Jennifer, Joe, Madison and Kyle
Tuesday, April 24, 2007
“I will praise you, O LORD, with all my heart; I will tell of all your wonders. I will be glad and rejoice in you; I will sing praise to your name, O Most High.” Psalms 9:1-2
Kyle had a quite night last night! When I came in this morning, his oxygen was at 39% and his platelet count increased to 81. Kyle’s blood gasses looked good; however, the x-ray showed that he still has some issues with the right middle and base lobes of his lung. They are going to increase the pressure of the ventilator (PEEP – Positive end-expiratory pressure) in order to expand his lung volume. To make a long story longer, they will not be transitioning Kyle to NCPAP today.
Unfortunately it appears Kyle has an inguinal hernia that recently ‘popped up’. Hernias are common among preemies because their stomach muscles are so thin. When babies are born prematurely and they use their intestines earlier, there is more pressure and fullness to the tummy. An inguinal hernia develops in the groin at the level of the skin crease between the leg and the abdomen. In a baby boy the bowel loop protrudes into the scrotum. According to Kyle’s doctor, since the hernia is on his left side, it can ‘spread’ to his right side producing a double hernia. Usually hernias on the right side will not spread to the left. On a grand scale, the hernia is the least of our concerns but will need to be repaired surgically at some point.
Doctors have come to see me,
From different cities,
Just to see me.
Stand over my bed, disbelieving, what they're seeing
They say I must be one of those Wonders of God's own creations
And as far as they see they can offer no explanation.
I believe fate smiled and destiny
laughed as she came to my cradle.
"This child will be able"
laughed as my body she lifted,
"Know this child will be gifted"
With love, with patience and with faith
He'll make his way.
Monday, April 23, 2007
“Before they call I will answer; while they are still speaking I will hear.” Isaiah 65:24
Kyle lost a little more weight, down to 3lb. 2oz. (1420 grams). Kyle and Daddy were able to kangaroo for 3 hours last night.
Tomorrow is a big day, they are going to do a lung x-ray and check his blood gasses in the morning to determine whether or not to attempt nasopharyngeal CPAP (NCPAP). NCPAP is in between the ventilator and CPAP. NCPAP provides a backup, similar to the ventilator but at a lower rate. Currently, Kyle receives 20 breaths per minute (bpm) with the ventilator, although he normally breathes above this level. The NCPAP has two prongs that extend through his nasal cavity and provide 10 bpm. With normal CPAP, which they have attempted in the past, there is no backup.
Please pray for Kyle to have a quite night and that the x-ray and blood gasses look good tomorrow!
Today, Kyle’s Occupational Therapist visited him and said he is doing well. His platelet count continues to increase. A couple more tests were performed on his urine and breast milk today to provide additional insight into the CMV. Kyle’s doctor thinks that he might only be a CMV carrier and hopefully the CMV flared up because of his bout with pneumonia.
Tonight feels like Christmas Eve…..a lot of anticipation, not much sleep, wondering what tomorrow will bring.
“For you have been my hope, O Sovereign LORD, my confidence since my youth. From birth I have relied on you; you brought me forth from my mother's womb. I will ever praise you. I have become like a portent to many, but you are my strong refuge. My mouth is filled with your praise, declaring your splendor all day long.” Psalm 71:5-8
Sunday, April 22, 2007
Kyle's platelet count continues to increase.......and Monday will be his last cycle of the steroids.
At this point, it doesn't appear that the steroids have helped significantly....In due time though.
I hear there is already a buzz in the media if Kyle thrives in athletics (unlike his father), whether the steroids gave him an unfair advantage versus other kids....
Joe, Jennifer, Madison and Kyle
Saturday, April 21, 2007
Friday, April 20, 2007
Kyle began steroids today! The doctor said that most babies respond very well to the steroids, but some do take a turn for the worst because of them. We are praying this gives Kyle the boost he needs to come off the ventilator. There was some debate amongst the doctors as to whether Kyle should begin steroids before they know more about his CMV. In the end, the consensus was that continuing on the ventilator indefinitely poses more risk than Kyle taking steroids while the CMV virus is potentially still active. As such, he had his first dose at 5:00 PM, and will continue receiving steroids every 12 hours for the next three days.
As far as the CMV goes, right now we are waiting on the results from a “quantitative” test that was done yesterday. A “qualitative” test was done originally to let us know that yes, he does have CMV. The “quantitative” test that is being done now will show how much of the CMV virus Kyle has in his system, and if it is an active infection now or lying dormant.
I probably should have done this sooner, but I didn’t really think of it. For those of you interested, I thought I’d give you an explanation of Kyle’s habitat and all the wires and tubes attached to him:
The top picture is where Kyle “lives” and is called an isolette. The bed is climate controlled for heat and humidity. Kyle wears a metallic probe, as seen in the 2nd picture. This probe is connected to the isolette and if Kyle’s body temperature becomes to warm or cold, the temp of the isolette automatically adjusts accordingly.
The third picture shows the other probes Kyle wears. The blue object on his foot is called a “pulse oximeter”. This device has a red light on it that shines though Kyle’s skin and somehow detects the oxygen level in his blood. The oxygen levels in his blood are then projected onto a monitor above his isolette (as seen in the fourth picture). Ideally, the numbers should be between 85 and 98 (the higher the better). If his levels go below 85, an alarm sounds until the oxygen level in his blood resumes to normal levels. This number is used to determine the concentration of oxygen that is fed to Kyle through his breathing tube. If it is consistently high, then the level of oxygen Kyle receives in his tube can be reduced until we hit 21%, if the number is low, then Kyle’s oxygen concentration is increased.
Also in the third picture are two round white probes on Kyle’s chest… one monitors his heartbeat and the other monitors his respiratory breaths per minute. Both of these numbers are also projected on the screen shown in the fourth picture. His heart rate is the top number and his respiratory breaths are the bottom number. Kyle’s ventilator is set to give him 20 breaths per minute, but he usually takes many more breaths on his own, as you can see from the bottom number indicated on the monitor. When this picture was taken (the third one), Kyle was receiving a blood transfusion. The red tube you see above Kyle is the blood going into his IV, which is on his right arm.
The fifth picture shows the tubes that go into Kyle’s mouth. The clear tubes on the bottom of the picture are his breathing tubes; one is used to give Kyle air while the other is used to suction any secretions that enter Kyle’s tube. These tubes connect to the ventilator. The other smaller tube is his feeding tube. Milk from a syringe is continuously fed through this tube directly into Kyle’s intestines.
Today has been one of both joy and sorrow. I am so happy to be home with Madison, but being away from Kyle is very difficult - more so than I even imagined. It helps that Joe is with Kyle and I am sure it will be beneficial for them to spend some alone time bonding. Joe was amazed at how much Kyle has grown since he last saw him. Joe was able to Kangaroo with Kyle, and is still doing so as I type this. I just spoke with the nurse and she said both are doing great.
Once again, thank you all for your thoughts and prayers. God's grace is apparent from your constant prayers. Even when things look bad, I can trust that He is listening to all those who invoke His name.
Jennifer, Joe, Madison and Kyle
Thursday, April 19, 2007
And the roller coaster continues…Yesterday morning we received news that Kyle’s platelet count had improved, and we were feeling very encouraged. The doctors were going to begin steroids today, however, last night we received news that Kyle has CMV when a urine test that was done came back positive for this serious viral infection. CMV is a virus that about 60% of pregnant women carry without ever knowing. It presents problems only when it is passed on to a baby during pregnancy. Kyle could have contracted CMV while he was still inside of me, or he could have contracted it since birth from the hospital, my breast milk or through one of his many blood transfusions. Unless it is life threatening, and thank God for Kyle it is NOT, there is not any treatment that can be done for CMV, as the medicine to treat it is very toxic to newborns.
The risks of CMV vary greatly depending upon whether Kyle contracted it in utero, or since birth. If it was contracted while he was inside of me, Kyle has a 90% chance of having some sort of long term disability such as cerebral palsy, vision or hearing problems. If it was contracted after birth, the risk of any long term affects decreases to just 10%. Although it will not change his course of treatment (as there is none) the doctors are going to run a couple more tests to try and determine when Kyle contracted CMV. Unfortunately, we will not know for sure, as Kyle would have had to of been tested in the first three weeks of life for a definitive answer. One very positive thing we have learned so far…Kyle had an eye exam yesterday and the doctor checked for CMV related eye problems and did not find any. At this point, we are just in a wait and see mode. If you want more information on CMV, the following website has a much better explanation than I can give: http://www.kidshealth.org/parent/infections/bacterial_viral/cytomegalovirus.html
As I type this, I am on a flight back to Ohio. The timing is not great, but I don’t think there will ever be an ideal time to leave Kyle. Joe and I are “swapping places” for a week, and tomorrow Joe will fly down to Orlando to be with Kyle while I spend time with Madison in Ohio. The following weekend, we’ll switch back. Although it will be (and already is) so hard to be away from Kyle, Madison needs her mommy too and we’re just not comfortable with her missing any more school at this point.
Sorry for not posting last night. With all of the events occurring surrounding the CMV, I was not able to hold Kyle until late in the day when I usually post…I Kangarooed with him from 8:00 PM until 2:30 AM, the nurses said 6 ½ hours has got to be a NICU record!
When I arrived back at the hospital this morning, the nurse said that I wasn’t allowed to hold Kyle before I left for the airport, as his oxygen levels were very high (around 60%) and he was desating frequently. Not long after I learned this, I was changing Kyle’s diaper and he pooped ALL OVER his isolette. I have never seen anything like it; Madison certainly never made messes like this! Anyways, there was so much poop on the walls of the isolette, as well as his bedding, that they had to change out his isolette, which meant that I got to hold him while they did all this! God certainly has a sense of humor! I held Kyle for about 2 ½ hours, during which time he did so well that his oxygen was able to be weaned down to 48%. I’m not usually the type of mom to tell “poop” stories, but in this case I just thought it was so funny!
As always, thank you all for your support! Your thoughts and prayers have definitely sustained us during this difficult time.
God Bless You,
Jennifer, Joe, Madison and Kyle
Tuesday, April 17, 2007
Another quiet day for Kyle...which is always a good thing! Kyle's oxygen is still higher than we'd like, at around 48% for pretty much the whole day. The doctors have decided that they are going to go ahead and start him on the steroids in the next couple of`days, rather than wait until his antibiotics are complete. At the rate we are going now, I have to wonder if his antibiotics will ever be complete! I am excited for him to try the steroids and am praying this is the boost he needs to get off the ventilator.
Yesterday, when I mentioned that I hoped Kyle's blood transfusion would help his platelet count, I misunderstood the doctors reason for the transfusion. As it turns out, Kyle was receiving a blood transfusion for the same reason he has always had transfusions...his red blood cells were low. I didn't realize that donated blood (in this case Joe's blood) is separated into three components: red blood cells (which Kyle receives), platelets and plasma. I thought that Kyle was receiving the transfusion to give his platelet count a boost, but unfortunately, they are two entirely separate issues. Anyways, Kyle's platelet count dropped again, and the doctors are becoming increasingly concerned. They have ruled out the most common causes for a low platelet count, which are certain infections or a viral infection. They are going to give Kyle another day or so for his platelet count to rise, but if it doesn't, he will be referred to a hematologist (blood doctor). Please pray that Kyle's platelet count rises!!!
Kyle is two months old today! He is being fed 10 cc's every hour (8 ounces a day). Kyle also graduated to bigger diapers, they are a little baggy, but I hear that's the style. He has sustained his weight, and is 3 lbs 4 oz. He looks so big to me! The two bottom pictures of Kyle were taken when he was one month old, the others were taken today at 2 months. He has gained nearly two pounds and has doubled in size just over this past month! All in all, we are so very encouraged, and we marvel at what a strong, stubborn little guy we have :)
You are all in my prayers. We are so grateful to have such good friends and family. I know that God sends his love to us through all of you.
In Christs Love,
Monday, April 16, 2007
Kyle did well today, although we did receive a bit of disappointing news. Kyle's culture is still growing, indicating that an infection of some sort is still present. Today was supposed to be his last day of antibiotics, but in light of this discovery, his doctors have decided to try him on yet another 7 day round of antibiotics. This is a new med he has not had before, and thankfully he will be able to take this medication orally. I don't think Kyle's poor veins could tolerate another week of IV's. We are bummed about this latest development, as we were expecting Kyle to begin steroid treatments tomorrow to assist in getting him off the ventilator. I guess we will have to just be patient..."Many are the plans in a man's heart, but it is the Lord's purpose that prevails."Proverbs 19:21
Kyle's oxygen is down to 44%, not perfect, but definitely heading in the right direction. I was able to Kangaroo with Kyle for a few hours today, which is always my favorite part of any day. I love holding him! I can't wait for the day when I can just pick up my son without "scheduling"it with a nurse, and not have a nurse and respiratory therapist help me or tape his tubes/wires to my clothing, etc. The only other news for today is that Kyle's platelet count has been low the last few days and continues to get a little lower each day. He was given a blood transfusion today to see if this helps his platelet count. If it doesn't, then Kyle will receive a platelet transfusion later in the week.
God continues to supply us with His strength. I know there is no limit to His supply, at least we have not experienced it and I know we will not ever see the end of His graciousness.
Sunday, April 15, 2007
Saturday, April 14, 2007
"Hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently." Romans 8:24-25
I wish I could say things have improved today, but unfortunately Kyle is still requiring a high concentration of oxygen. His needs have not gone below 57% today, and most of the time they have been higher. An X-ray was done to see if it would shed some light on the situation, but nothing new was found. His lungs are still damaged, although as Kyle grows, new healthy lungs will grow as well. Kyle has had a leak in his breathing tube, while he grows bigger, the tube stays the same size. Kyle is not quite big enough for the next size up in tubes, but his respiratory therapist was able to trade out a portion of the tube for larger size. Hopefully this will help his breathing.
Kyle's feedings continue to go very well. His weight is up to 2 pounds 14 ounces. It seems like Kyle just hit two pounds, and already he is creeping up to 3 pounds! I expect we will hit that milestone sometime in the next week.
Here is a passage to strive towards: "You are my portion, O LORD; I have promised to obey your words. I have sought your face with all my heart; be gracious to me according to your promise. I have considered my ways and have turned my steps to your statutes. I will hasten and not delay to obey your commands. Though the wicked bind me with ropes, I will not forget your law. At midnight I rise to give you thanks for your righteous laws. I am a friend to all who fear you, to all who follow your precepts. The earth is filled with your love, O LORD; teach me your decrees. " Psalm 119:57-64
Jennifer, Joe, Madison and Kyle
Friday, April 13, 2007
Today has been a rough one for Kyle, at least as far as his oxygen levels go. He has been on about 60% concentration (the goal is 21%) most of the day. The doctors can't find any reason in particular for the increase, just that some days are better than others for Kyle. For the first time in awhile, I was not allowed to Kangaroo with Kyle because he is not doing very good. Hopefully tomorrow will be a better day.
Kyle is continuing on his antibiotics, although the doctors are not convinced that his infection is a "true infection" such as the bouts with pneumonia he had earlier. Instead, they think he is fighting more of a colonization of germs on his endotracheal tube (breathing tube). They said that these tubes are just a breeding ground for infection/germs...we are putting a foreign object down his throat where it is moist and dark. The doctor does not really expect the growth on the tube to go away, at least until Kyle is off the ventilator. The problem is, the infection makes it harder for him to get off the ventilator. Another catch 22 with the ventilator.
This week Kyle began working with an occupational therapist, who will now be meeting with him three times a week. His therapist is so nice! She checked his muscle tone and reflexes and said that he is doing perfect for a baby his age. Today she showed me different exercises that I can do with him that will offer him comfort, mostly things that represent containment, similar to swaddling a baby. In the picture above Kyle is swaddled and then has a bean bag pillow on him that is supposed to offer gentle pressure, similar to as if he was still in the womb. She also brought him a medical "gel pillow" for his head. Joe jokes that Kyle has a "toaster head" meaning that his head is thin enough to fit in a toaster. Kyle does not like to lay on his back, and when he does, his neck is not strong enough to support his head, so Kyle's head is constantly on it's side. Since Kyle is still developing, the shape of his head has sort of developed thin and flat. Anyways, the therapist brought him a special pillow to help with his "toaster head."
Although I sometimes sound frustrated, all in all, we are very hopeful that everything will be fine with Kyle. We are so optimistic we have even begun to work on the nursery! When we left for vacation I was only 22 weeks pregnant and never imagined I would be coming home with a baby! As far as his nursery goes, the only thing we had done before vacation was to order his crib, and when my water broke so early, we cancelled that. If something happened and he didn't make it, it would be to painful of a reminder to have his unused crib at home. Anyways, now that things have calmed down we are realizing we have a baby but none of the usual baby gear! To that end, Joe painted the nursery last week, and I have begun looking online at stuff to decorate it with, we have decided to go with a jungle/safari theme. The day I was released from the hospital, we went to Babies R Us to buy a breast pump. Joe and I were so scared for Kyle's future, we did not look at anything but pumps. Imagine having a baby, but being to afraid to buy him clothes, because he may die before ever getting the chance to wear them. We have come such a long way since then...GOD IS GOOD and has certainly blessed us!!!
Thursday, April 12, 2007
Kyle continues to fight his infection and seems to be doing better. To be safe, the doctors are going to keep him on his antibiotics until next Tuesday to give him a full seven days on his newest medication. The plan until then is just to help him grow as much as possible. To assist him in gaining weight, the doctors increased the amount of calories that are added to Kyle's breast milk. He gets 6 ounces of breast milk a day, supplemented with a fortifier to boost each ounce from 20 calories to 27. (The fortifier also adds some vitamins and minerals that preemies need but that are missing from breast milk.) In addition to the 144 calories he gets via his feedings, he also gets a fatty oil, potassium and sodium supplement every day. All of this goes in through the feeding tube that is inserted in his mouth. Right now he gets "continuous feeds," meaning that the fortified breast milk is being pumped into him at a constant rate, 24/7. When he gets bigger and older the continuous feeding will be replaced by feedings at short intervals. The doctor said that the fact that he is able to take lots of breast milk and nutrition is extremely helpful, and not something that always goes well for babies of his size.
Once Kyle has finished his antibiotics, his doctor would like to try him on a few days of steroids to assist him in coming off of the ventilator. Joe and I have mixed emotions about this. We are frustrated with Kyle still being on the ventilator and want to get him off, but we were told originally that steroids are reserved for the sickest babies and would only be used as a last resort. It is disappointing that Kyle now falls into this category. The steroids seem to have great results, but also come with a risk of side effects, one of them being brain damage. We just have to continue to pray and to trust the Lord.
We are truly blessed to have such supportive and caring family & friends. We enjoy reading your postings and look forward to sharing them with Kyle when he's older!!!
God Bless You All,
Jennifer, Joe, Madison and Kyle
Wednesday, April 11, 2007
As promised, here are some pictures of Kyle at 7 weeks. My Aunt Jean had a great idea and picked up some red straws which are much easier to see. Kyle's length is 14 1/2 inches now. Because of the glare of Kyle's isolette, when taking a picture, we have always had to have the camera up against the glass surrounding Kyle's isolette. Today, for the first time, when I put the camera up against the glass, Kyle's entire body was to big to fit into the frame of the picture. Therefore, I had to move it back, which also means that there is a slight glare in the pictures. Anyways, the point of all my babbling about this is that it is another example of how much Kyle has grown!
Kyle is 7 weeks old but the medical staff say he's 32 weeks old. They continue to measure his age as if he was still inside of me. It is hard to imagine he is still not supposed to be born for another 2 months! It is heartbreaking and inspiring at the same time to watch such a tiny creature work so hard during what is supposed to be a time in his life when he is still insulated from pain and suffering. Most 32-week old babies are still safe and snug in the womb, but Kyle has had heart surgery, countless needle sticks, three serious infections, and a daily struggle to breathe. He is so brave!
Sorry I did not post yesterday. I had every intention of doing so, but I took Joe and Madison to the airport last night and stopped at the hospital afterwards. I was so bummed to see Madison and Joe go, but Kyle cheered me up by Kangarooing with me until almost 1 in the morning. After that, I was just to tired to write anything.
Kyle has had a great weight gain the last couple of days...he is now up to 2 pounds 10 ounces! That's the good news...the bad news is that Kyle's culture is growing something, confirming that he does have yet another infection. This is his third infection in as many weeks. On Saturday, when they first suspected Kyle may have an infection they started him on 2 different general antibiotics that usually cover most infections...hoping to get a head start on treating the infection while we waited on the results from the culture. Unfortunately, once it was discovered yesterday what organism was growing, they had to change his medication. The antibiotics they were given him aren't ones that covered the particular infection that Kyle has. The little veins in his arms and legs are shot, so they had to place an IV in his head to administer his medication. The nurse assures me this is not any more painful for Kyle than having an IV in his arm, but it just looks so uncomfortable to me.
Kyle had the opportunity to meet his Aunt Lynn and Uncle Bob on Monday night. They were heading to their condo in Daytona, and stopped in Orlando on their way too see Kyle. It has been so nice for us to have the opportunity to see family and friends lately. We are very fortunate that we choose Orlando for our family vacation this year. Last year we went to Hawaii and prior to that we were in Puerto Vallarta, Mexico. Just think if my water had broke in either one of those places!
Tuesday, April 10, 2007
Kyle's oxygen levels have improved over the last couple days and consistently hover in the high 30's/low 40's. He is still receiving 2 different antibiotics via IV, until the doctors can rule out an infection or pin-point the specific infection that Kyle has. As of now, the blood and urine cultures that were done on Saturday are still coming back negative, however, they wait 72 hours before officially ruling that he does not have an infection.
We are specifically praying that the cultures are negative and especially that this will enable him to get off his IV meds. Poor Kyle has had a rough time with the IV lately. His veins are so tiny and delicate, the nurses have trouble getting the IV inserted correctly in the first place and always have to do a couple pricks until it is up and running. To make it worst, his vein usually blows with-in about 12 hours and they need to start all over again. Kyle needed a blood transfusion today, and the plan was that Joe would Kangaroo with Kyle during the transfusion. Unfortunately, about a half hour into their time together, Kyle's vein went bad and the nurses had to put Kyle back into his isolette. Joe was pretty bummed, especially because he does not get the chance to hold Kyle very often.
We had a wonderful Easter and were able to get away from the hospital for a little while. We attended a Sunrise Easter Service yesterday morning at Sea World, it was a beautiful service, although the weather was a chilly 51 degrees. I probably shouldn't complain, I hear Ohio was hit pretty good with snow...instead of a white Christmas this year, sounds like it was a white Easter! After the service, we went to the hospital to spend time with Kyle. Madison had wrote the Easter bunny a letter to let him know I had the baby early, she wanted to make sure Kyle received an Easter basket. The bunny must have got her letter, because Kyle had a basket full of goodies there when we arrived. One of the nurses made little bunny ears for Kyle and attached them to his hat. He looked so adorable!
After we left the hospital, we drove to Melbourne, Florida, which is on the east coast about an hour from Orlando. My aunt and uncle have a 53 foot Hatteras Yacht they keep docked in Miami over the winter. They are in the process of taking the boat up the coast, and lucky for us, were docked in Melbourne over the weekend. We had a nice dinner and then spent a leisurely day sailing. At one point, dolphins were chasing our boat...Madison said this was the highlight of her trips to Florida, even better than Disney. My Great Aunt Jean, whom before yesterday I had never met, lives in Melbourne and also spent the day with us. It was wonderful to meet her, and we all instantly loved her. Since Kyle has been born, Aunt Jean and her sisters have been amongst Kyle's biggest cheerleaders. The Lord is amazing, despite the difficult times we are going through, he is also showering us with unexpected blessings, such as being reunited with long lost family.
Happy Easter to you all!
Jennifer, Joe, Madison and Kyle
Saturday, April 7, 2007
Very early on the first day of the week, just after sunrise, they were on their way to the tomb and they asked each other, "Who will roll the stone away from the entrance of the tomb?" But when they looked up, they saw that the stone, which was very large, had been rolled away. As they entered the tomb, they saw a young man dressed in a white robe sitting on the right side, and they were alarmed. "Don't be alarmed," he said. "You are looking for Jesus the Nazarene, who was crucified. He has risen! He is not here. See the place where they laid him. But go; tell his disciples and Peter, He is going ahead of you into Galilee. There you will see him, just as he told you." Mark 16:2-7
Kyle had his last dose of antibiotics around 9:00 pm yesterday. Last night, his oxygen hovered around 60%. The Nurse Practitioner wanted to be proactive and had his breathing tube replaced this morning and ordered some additional tests. It appears Kyle has (or still has) an infection. It is extremely frustrating to Jennifer and me to comprehend how Kyle can get an infection while he was on antibiotics...?
On a less somber note, Kyle's weight is up to 2 lbs. 6 oz. When I got to the hospital this morning, Kyle had a FULL diaper. As the nurse was changing him, he decided to make a bigger mess! I was so thankful that he did, because I was able to hold Kyle for the first time today while the nurse changed his bedding. During kangaroo care, the nurse places Kyle on your chest. But when I was holding him today, it was truly amazing how something so light can leave such a heavy impression on oneself.
Tomorrow, we are going to Sea World for a Sunrise Celebration Service at 7:00 am. Kirk Cameron is speaking at the service (the actor from the 80’s TV show Growing Pains). I’m pretty sure Jennifer had a poster of him hanging up in her room when she was an adolescent…Later in the day we are heading to Melbourne, FL to visit with Jennifer’s Aunt Dawn and Uncle Bob who will have their house boat in the area. It will be good to be with family on Easter…
We will not be posting the blog tomorrow, so I would like to wish you all a very Happy Easter!
He has risen. He has risen indeed!!
Joe, Jennifer, Madison and Kyle
Friday, April 6, 2007
The death of Jesus:
"From the sixth hour until the ninth hour darkness came over all the land. About the ninth hour Jesus cried out in a loud voice, "Eloi, Eloi, lama sabachthani?"—which means, "My God, my God, why have you forsaken me?" When some of those standing there heard this, they said, "He's calling Elijah." Immediately one of them ran and got a sponge. He filled it with wine vinegar, put it on a stick, and offered it to Jesus to drink. The rest said, "Now leave him alone. Let's see if Elijah comes to save him." And when Jesus had cried out again in a loud voice, he gave up his spirit." Matthew 27:45-50
Good Friday really does have a different feel, doesn’t it? It’s somber and reflective; there is a grand celebration on the horizon (this coming Sunday), but today is different. Today we aren't visited by the Easter Bunny, we don’t exchange gifts or buy cards. Today we reflect on the cost of our salvation.
Kyle and Daddy were reunited...and celebrated the occasion by Kangarooing this afternoon! Joe was pleasantly surprised by how big Kyle has gotten. Kyle's weight is up to 2lb 5 oz. He has actually doubled in size from his lowest weight (not his birth weight)...at one point Kyle was down to 1lb. 2 oz.
We received the results of one of Kyle's tests, and he takes after his great grandpa Ted, in that he has Reflux. Reflux is when liquid from the stomach comes back up the esophagus (food pipe). The doctors discovered that Kyle's milk has been coming back up and entering his lungs, which has contributed to his increased breathing difficulties lately and most likely his bouts with Pneumonia. To treat his reflux, the doctors changed the positioning of Kyle's feeding tube. Instead of going directly into his stomach, the tube now goes directly to his intestines. Also, Kyle has been put on continuous feeds. Instead of being fed every three hours, Kyle will continuously have a small amount of milk pumped into him. Reflux is a condition that Kyle should grow out of. The muscles at the lower end of the esophagus should become tight keeping the food from backing up. In premature infants and even some term infants, these muscles are not yet fully developed and coordinated, but should be soon.
I won’t wish you a “happy Good Friday,” because even anticipating the joy of Christ’s resurrection, this isn’t a happy day. Instead, I hope you’ll have a reflective Good Friday. In two days, when we celebrate the most amazing event in human history, our greetings of “happy Easter!” will be all the more meaningful if we’ve first taken time to ponder the sober message of Good Friday.
Have a reflective Good Friday, then, and a blessed Easter.
Jennifer, Joe, Madison and Kyle
Thursday, April 5, 2007
"Do not seek what you should eat or what you should drink, nor have an anxious mind…your Father knows that you need these things. But seek the kingdom of God, and all these things shall be added to you." Luke 12:29-31
I am pleased to report that Mr. Kyle had another largely uneventful day today, which is exactly what he needs. Actually, it wasn't totally uneventful; he continued to make strides with his breathing. He was down to about 40% oxygen for most of the day and some parts of the day it reached as low at 36% (recall that the goal is 21%; he was at 50% yesterday). That means he is able to do more to oxygenate himself with less oxygen being pumped into him. We still have not received the results from the tests that were done yesterday, hopefully we will hear something tomorrow. Thankfully, I was able to hold Kyle again today - for the fourth day in a row! It is a good thing to, because Daddy is flying in tonight and I am sure he will hog Kyle for the next few days!
Another eye exam was done on Kyle yesterday and we received some good news. A babies eyes develop in stages. As I mentioned last week, Kyle's eyes were only about 30% developed when he was born. A common problem among preemies is that their eyes may be developing normally, but then they fail to move to the next stage. Since the doctor last saw Kyle, his eyes finished one phase and began developing in another stage. Praise the Lord!
Sorry for the short post...I am off to the airport to pick up Joe and Madison. I can't wait to see them. It has been so long since Joe was down here...actually I have not saw him since March 12. I can't wait for Joe to see Kyle, he has changed so much!
God Bless You,
Jennifer, Joe, Madison and Kyle
P.S. Happy Birthday Dad! :)
Wednesday, April 4, 2007
Kyle had an uneventful day today. His oxygen concentration continues to stay higher than we'd like, it is at 48% now. I was able to Kangaroo with him for about 4 hours today. While we were Kangarooing, his oxygen went down to 38%...a sure sign that he was enjoying himself! Samples of secretions from Kyle's endortracheal tube were taken today and sent to the lab for testing in hopes that they may shed some light on his breathing troubles lately. The doctors are looking for two things. First, they want to see if his infection is still present. They are also looking to see if he has Reflux. This is where the contents of his stomach move up into the esophagus and possibly his lungs. If Kyle's milk is coming back up and moving into his lungs, this would account for some of the additional oxygen requirements lately. We should have the results of both tests in the next couple days.
Kyle's weight is up to 2 lbs. 2 oz. today. Something I haven't really mentioned before is his length, which is measured every Monday. When he was born, Kyle was 29 centimeters (11 1/2 inches) and Monday he measured 36 centimeters (14 inches). While Kyle has definitely gotten longer, the reason I haven't posted weekly updates on this is that I am not sure how accurate the measurements are. Immediately after he was born, Kyle was "stretched out" and measured very precisely. Since then, they measure him weekly, but some weeks he gains and other weeks the measurements say he has gotten "shorter"...which I know is not possible. His nurse said that, although it is interesting for us, his length does not have any bearing on his treatment medically so they don't feel it is worth it to "torture" him by stretching him out to get an absolute measurement. Regardless of what their measurements say, I can definitely tell a difference in his length. Kyle has very long fingers and big feet...according to the nurses, this is a sign he is going to be tall like Daddy.
Kyle, as expected, had a blood transfusion early this morning. In addition, his MD team decided to put him on pump feedings over an hour instead of feeding him the full amount at once every 3 hours. Either method gives him the same amount of milk, but the pump feeding spreads it out over an hour rather than filling his tummy all at once. The doctors are hoping this will help his lungs some, as filling his tummy full all at once gives them a bit of a workout. Kyle is still on IV antibiotics to fight the pneumonia. He has had a heck of a time keeping his veins open for more than 12 hours at a time. He’s been quite a pin cushion—his poor little arms and feet need a break! Once he’s finished the antibiotics, which will be Friday, he can get rid of the IV.
Kyle is six weeks old today and we celebrated the occasion by Kangarooing for a few hours this afternoon. As always, I am posting his straw pictures to mark his weekly growth. In the bottom picture, you'll notice he is holding the straw. Kyle apparently decided he would rather use the straw as a toy and picked it up while I was taking the picture. He has become so much more alert over the last week, and has his eyes open many times now throughout the day. Last night, he was even wide awake for about half an hour! That doesn't sound like much time, but previously he never kept his eyes open for more than a couple minutes at a time. The nurses have all been commenting on what beautiful, big eyes he has...and he has the longest lashes! When he was born, his eyes were a blue grey color, but they have begun to darken and now have a hint of brown. I think he is going to have brown eyes like Daddy!
Tuesday, April 3, 2007
I am pleased to report that we received the official news that Kyle does not have meningitis. Praise the Lord! His oxygen continues to be so-so...he is on 50% oxygen right now (the goal is 21%). The nurse said that his high oxygen level is probably due to the fact that he is still fighting the lung infection and that his hematocrit test was low today. The hematocrit (HCT) is the fraction of blood volume consisting of red blood cells. For example: a hematocrit of 40 means that red blood cells account for 40 percent of the total blood volume. Typically, when Kyle reaches 35 or lower, they give him a blood transfusion. Kyle's was 33 today, which means he will probably receive a transfusion in the next day or so.
Madison flew home today. While it is always hard when she leaves, this time was not as bad since we were able to enjoy a nice long visit (12 days!) and she will be returning with Joe on Thursday night. Madison did great with Kyle and read to him everyday during her trip to Orlando. Although she doesn't like to admit it, she is going to be an awesome big sister someday.
With Madison gone, I was able to resume Kangarooing with Kyle. This afternoon we enjoyed 4 hours of cuddle time! When the nurse placed Kyle on my chest, he was wide awake. He snuggled in and looked right up at me. My heart melted! When Kyle is in the isolette, I often wonder if he can really see me. Besides that his view is obstructed by tubes, tape and glass, his sight is not fully developed. Today, there was no doubt in my mind that he could see me, and even better, he was actually looking for me!
Thank you so much to all who have posted messages and sent e-mails and spent even a few moments wishing us and our little guy well. Your long-distance hugs are very much appreciated!
Sunday, April 1, 2007
Palm Sunday...today is the Sunday with a split personality. It starts with an upbeat gospel recounting Jesus’ triumphal entry into Jerusalem. It is a festive affair, complete with a parade route strewn with palm branches. But we quickly progress to the stark reading of Jesus’ passion, bearable only because we already know its happy ending. Mel Gibson’s film did us a favor in reminding us how shockingly brutal the whole business really was. If you have not seen "The Passion of the Christ" or if it has been awhile, I encourage you to watch the movie this week.
Good news...Our big boy weighed in last night at a whopping 2 pounds!!! It took almost 6 weeks for him to get there, but he finally made it! Praise God! Kyle's spinal tap is still coming back negative. His oxygen level continues to be a little high, the vent settings have been between 45% and 50%.
Something I forgot to mention earlier in the week...on Tuesday Kyle had an eye exam. The eye exam itself was very brief, and took place from the comfort of his isolette. Prior to the exam Kyle was given eye drops to numb his eyes. During the exam the nurse held Kyle's head steady while the doctor put a clip on his eyelids to hold them open. I was not allowed in the room during the exam, but I am told the clip looks like an awful torture device. The doctor then peered into Kyle's eyes with the aid of a light mounted on his forehead and a set of hand-held magnifying lenses. The whole thing took less than five minutes. Kyle didn't enjoy it very much and promptly fell asleep the moment it was over. Eye problems in preemies are fairly common. When Kyle was born, his eyes were only about 30% developed, which is normal for as early as he was. So far, Kyle is on target for his age, but the doctor said that issues come into play when the babies eyes do not continue to develop properly outside the womb. Because of this, the doctors will give Kyle weekly eye exams to make sure his eyes continue to develop normally.
"Took branches of palm trees, and went forth to meet him, and cried, Hosanna:Blessed is the King of Israel that cometh in the name of the Lord."~John 12:13~