Happy Anniversary

Four years ago today, Krista and I got married. We wrote our own vows about traveling on a journey together. We never anticipated the road would be quite this rough, especially so early in our marriage, but we have definitely been standing strong together, and drawing our strength from each other.

Kelson had a great night, followed by another great day. We arrived early at the hospital and got to give Kelson his bath. It was still just a sponge bath, but we were able to move him around better since he has less tubes. We were also able to put clothes on him. I held him for his 9 AM feeding. He now takes 48 cc over an hour, and rests for two hours between feedings. They were able to put him on a real scale to get a more accurate weight, without all the tubes. He now weighs 5 lb 5 oz. For now, the doctors plan to stay on this course, because everything seems to be working well. However, they like to throw us a curve ball every now and then.

At noon we left the hospital to do a final walk through on our new house, and then proceeded to the closing. Everything went smoothly, and at 2:30 we were officially in debt again! We are so excited to get into the new house this weekend, and even more excited to live in it as a family of four.

After the closing we went back to spend some more time with Kelson. We left the hospital to shop for our anniversary gift, and started picking up supplies for Claires third birthday party. For dinner we went to The Olive Garden. (Thank you to Kelly and Will Gerber for the gift card we've been saving!)

Considering the circumstances, we really couldn't ask for a more perfect day. Kelsons health is improving, we bought our dream home, and spent our entire anniversary day together. To top it all off we got a much needed rain. The next few days will be busy unloading trailers and unpacking boxes, along with several hours holding Kelson, witnessing a miracle with each breath.

WOW

The day started out like any other. Krista and I are attempting to get into a routine, and get everything lined up for the house closing tomorrow. We had positive reports from the nurses, and did not get to the hospital until noon.

When we reached Kelsons isolette, I immediately noticed something was different...his mouth was wide open and the breathing tube was GONE. About 30 min prior to our arrival, the doctors had taken the intubation tube out, and put Kelson on the special nasal cannula that controls his breathing through his nose. He looked great! I then noticed he was swaddled in a blanket, which meant the chest tube had been removed as well! Needless to say, we were completely blown away at the changes, and the nurses loved seeing our shock and surprise. Kelson decided he wanted one more tube gone, and proceeded to pull out his feeding tube on his own. It is now in his nose as well.

Obviously this was all great news. The doctors are not saying Kelson won't need a chest tube again, but for now his chest x-rays look good. Since the chest tube is out, that means we can resume holding Kelson. We still can't pick him up, but it only takes one nurse to get him out of bed, so we can hold more often. We are not sure if all the big changes are a result of the new drug, or just coincidental, but either way it is good.

Krista got to hold Kelson for his 3 PM feeding. He can't have a bottle until he is off the ventilator completely, but loves sucking on his pacifier. While Krista was holding him, we got one more big change. The isolette was removed, and a crib wheeled into place. Since Kelson can maintain his own temperature, and can be swaddled, he was promoted to a crib. I held Kelson for a short while after his feeding, and then the nurse put him in the new bed. He also got to put on his very first clothes.

Tomorrow we are heading in early with the hopes of giving Kelson his first real bath. After we spend the morning with him, we will head to Bloomington to finally close on the new house. If all goes well we will be moving in Saturday. If anyone is bored Saturday morning, we might be able to put you to use hauling furniture and boxes!

I'm sure there will be some more bumps in the road, but it was great to see such exciting changes today. If all continues to go well, we might be able to start seeing a light at the end of the tunnel!

New approach

Kelsons chest tube continues to drain. In fact, it put out over 50 cc on the night shift. This means that even though the new formula changed the consistency of the fluid, it still appears to be leaking. This brings us to another bump in the road. The doctors are trying to be as conservative as possible, and continue to move through the "easy fixes". The next step is to try a relatively experimental treatment with a drug called octreotide. Octreotide has not been approved for use in the treatment of chylothorax, but has been successful in 14 of the 19 published clinical trials. Since there is little to no research on this treatment, the side effects and correct dosage is unknown. I did quite a bit of research on the drug, and feel the good can definitely outweigh the bad, but it is still a gamble.

They have not made many changes to the ventilator, but Kelson is now at 21% oxygen, which is the same as room air. Hopefully they can continue to make small changes and remove the breathing tube.

Claire will be spending the next three nights with my mom, as we adjust to doing some work, and hopefully closing on the new house.

Hopefully the month of June will bring us more luck, and we can start to see the light at the end of the tunnel.

Holiday?

When we heard talk of the upcoming holiday, we had to stop and think about what the people around us were talking about.  Afterall, we had just celebrated Easter when this whole journey started.  It's hard to believe that today was Memorial Day.  Like Trever said in an earlier post, in our minds it is still late April, not nearly June. 

Memorial Day was another restful day for Kelson.  Trever and I headed to the hospital and hung out in our normal chairs between Kelson's isolette and the nurse's office.  We visited with the doctor and his staff during rounds and they mentioned changing his ventilator settings again and they were going to keep everything else the same.  We spent the morning balancing checkbooks, paying bills and asking our nurse LOTS of questions about life in the NICU.

Mid-afternoon brought our only visitors for the day. Mom, Dad & Claire brought Grandma Great for a short visit.  Then, believe it or not....WE LEFT THE HOSPITAL.  This was the first night we had left the hospital "early".  We took off about 4:15, ran a few errands and went back to Mom and Dad's and made supper.  This was only the 2nd meal I had cooked in the last 34 days, unless you count making a ham sandwhich and salad in the Carle Cafeteria cooking. 

Trever helped dad pick up the round bales that were baled yesterday, I lost a game of chutes and ladders to Claire (but creamed her in Candy Land) and now it's time to hit the sack.

Tomorrow could be a big day.  Wish me luck! :)

Resting Day

It was a quiet morning, especially since Claire had spent the night at my moms, and was not around this morning. Krista and I got up early, in order to catch a morning church service. We learned that the United Methodist Church in Mansfield met at 8 AM, and was on our way to the hospital, so we joined them for worship. They have had Kelson on their prayer list, and had brought Kelsons prayer cap. It was a very nice service, and got us recharged for the week.

Kelson was having a good morning. He had very little drainage from the chest tube overnight, and seemed pretty comfortable. Around noon it was bath time. Kelson really enjoyed the warm water on his skin, and having his hair washed.

We took a break this afternoon and spent some time with Claire at the mall. When we went back to the hospital, Kelson was sleeping soundly. He was "snug as a bug in a rug" according to Claire.

After several big days of changes, today was just a resting day. As we watch Kelson sleep he looks so peaceful and perfect. It is hard to believe what he has overcome, and the obstacles he has to face in the months ahead.

Round and round we go....

I am starting to feel like a broken record writing these blog posts. Kelson was feeling good this morning. He had minimal drainage from his new chest tube last night, and was looking good. My sister was back from Ohio this weekend, so she got to see Kelson again. Claire was surprised to see her cousins in the waiting room when she got here this morning. And is getting to spend the day and night with them at my moms house.

This mornings doctor report sounded pretty good, but the doctor wanted to retest the fluid that was drained off the lung yesterday. At about 5 PM the nurse practitioner came to discuss the test results. She said that Kelson would potentially need surgery, and may even need transferred to a different facility. However, when we met with the doctor tonight, he basically told us that it is too early to know what the next step will be.

For now, what we do know is...
The formula change is helping, but is not a long term fix.
They are successfully weaning the ventilator.

We still have a lot of waiting time, and trial and error, but each day brings new joys, and new struggles. Our patience and need for control continue to be tried and tested as we continue to face more and more unknowns. We just need to keep focused on the thought that each day is one more closer to us eventually bringing Kelson home.

We were so excited when we arrived at Kelsons bedside today. After a few rocky days, we were greeted by an alert, happy looking little boy. Kelson was all smiles and ready to play. His temperature was normal, and he had great color.

Krista got to hold him for feeding time, and he did much better than the day before.

Even though he looked great, we were informed that the fluid on his chest had continued to build overnight, and the plan for the day was to reinsert the right chest drainage tube. This was very disappointing to hear, because we can't hold Kelson while the tube is in. Even though it is the best thing for him, it will be hard to not hold for a while.

Krista had to go meet with her employer today, so that meant Kelson and I would get some one on one time. Normally we have to space out our holding times, but I convinced the nurse to let me hold him for the 1 PM feeding before they put the new tube in. This was his first feeding on the new, special formula. I was worried he would not react well to the diet change, but he didn't even spit up. Hopefully the new formula will allow the chylothorax to heal, and the chest tube can be removed.

At about 3:30 the doctors came to put in the new tube. We had to leave the area, because it is a minor surgical procedure and requires a sterile environment. Today we learned just how tough our little man is, because he was still smiling afterwards, even without sedation! I think he was relieved to release some of the pressure that had been building on his chest. Within minutes if inserting the new tube, over 30 cc of fluid had been drained off. The X-ray tonight already showed major improvements.

Even though Kelson had to have the chest tube put back in, it still was a good day. Since the pressure has been released from his chest, he will likely tolerate the ventilator changes better, and may be able to finally get off the vent. Kelson is already trying to pull the tubes out of his throat, so hopefully it will happen soon!

The day started out ok, however Kelson was restless. We decided Krista would hold him for the 9 AM feeding to help calm him down. Unfortunately it didn't help. Not matter what we tried, we could not console him. Finally they put him back in bed, and gave him sedation to allow him to sleep.

Kelson rested the majority of the day without any major episodes. We had a few visitors, and went to Lil Porgies BBQ for lunch with Ryan Rademaker.

After lunch we walked back to the hospital. When the nurses did the 3 PM assessment, they were a bit concerned. We have had the same nurses for 3 days in row, and they could tell something just wasn't right. He was still agitated, was breathing heavy, and had a slight temperature. They called the doctor, and the doctor wanted to just monitor the changes. Finally at 5 PM they ordered a chest X-ray and some more blood work. The chest X-ray showed more fluid, and the doctor aspirated him again and drew off 8 cc of chyle fluid. After that pressure was relieved, Kelson seemed to settle down. Luckily, the blood work all came back normal.

The 5 NICU doctors had a conference over Kelsons case and have decided to change his diet. Instead of breastmilk, Kelson will be getting a special formula that has a special type of fat in it. The fat can be broken down in his intestines instead of entering his lympatic system, and should allow his body more time to heal. They expect this to take 4-6 weeks, and then they will attempt to put him back on a regular diet and see what happens next.

We are happy to have a better plan for Kelsons healing, and hope we will start seeing some improvements soon.

Better Day

We had a much better day today. Kelson had a pretty calm night, and was ready to cuddle with Krista this morning.

After yesterday's diagnosis of the chylothorax, they had stopped his feedings, and started him back on IV nutrition. Unfortunately, we dont know much more about the extent of this condition, but the doctors are very optimistic. They believe the chylothorax was the cause of the hydrops, but now the cause of the chylothorax is unknown. The drainage tube has been out for several days, and the amount of fluid on the lungs was minimal compared to how much they had drained off before. They were able to aspirate again, and removed about 20 mL. Since the drainage is so slow, they think the condition is healing itself, and will not make any changes for now.
They restarted his feedings, and we are waiting to see if the fluid re-accumulates.

Kelson had a surgical consult today, as well. He has a minor hernia that will be corrected prior to us going home.

We also had a consult with the geneticist tonight. The good news is that there is no physical signs of Kelson having any genetic disorders, but there is a lot of testing/research to be done.

It was an overwhelming day, with a lot of information to absorb, and many questions left unanswered. It will continue to be a waiting game, to see if Kelsons body continues to heal itself. Luckily, things seem to be more optimistic, and Kelson did not have any major episodes today. We will continue to take things one day at a time!

Another tough day

The day started out pretty calm. Kelson had another good night, and Krista was able to hold at the 8 AM feeding. After the feeding, we decided to leave the hospital for a few hours and visit the mall, especially since things had been going so well. We returned just after lunch time.

At 2 PM, it was my turn to hold. My mom was here so she got to see him up close and personal. While I was holding him, the Respiratory Therapist stopped by to adjust his ventilator settings. We were a bit surprised, because we didn't think there would be any major changes until at least tomorrow. The new ventilator setting was going to allow Kelson to breathe more on his own. Unfortunately, Kelson noticed the change immediately, and did Not like it. He started dropping his heart rate and pulse ox. Suddenly I had a team surrounding my chair, working on Kelson while I was holding him. They had to change the vent settings back to where they were, and increase his oxygen until he finally stabilized. They put him back in his bed, and he settled back down, but never seemed as content as he had been.

When the doctor came to evaluate him, she ordered another chest X-ray, because his lungs sounded rough. The X-ray showed that there was noticeably more fluid than had been there two days earlier. They decided to aspirate his chest to see if they could draw the fluid off without having to put the drainage tube back in. The fluid that was drained off was very milky, compared to a more clear yellow liquid that had been drained off previously. They immediately sent the fluid off to be tested.

We finally got the test results back at about 7:30 tonight. We learned that Kelson has a chylothorax. We don't fully understand what this condition is, but it is very rare. Most of the nurses have little to no experience with it. Basically it is causing fatty fluid to accumulate on his lung. We hope to learn more about it tomorrow, and know a better plan for treatment. As for now, just continue to pray for Kelson, and for the wisdom of his medical team. We hope that they will be able to treat the condition and the road to healing will continue.

We had another great day with Kelson. We got up early, and were at the hospital by 8 AM. We thought we only one of us was going to get to hold Kelson, but our nurse said if we held at the 8 AM feeding, she might let us hold again at 5 PM. Kelson has adjusted really well to being held, and does great when he is out of the isolate. Krista held him for 2 hrs while he ate his breakfast.

When we talked to the doctor, she said he was doing great. They shortened his feedings to one hour, and will continue to wean the settings on the ventilator. All of his recent blood tests have come back good, and the goal is to take out the breathing tube by the end of the week! He will then be on a nasal cannula that still helps him breathe with the ventilator. They will also be changing the feeding tube from oral to nasal, so he might be able to take some feedings from a bottle once the intubation tube is out.

This afternoon Krista and I enjoyed a walk in the nearby park. It was good to get some exercise and fresh air. At 5 PM I got my turn holding Kelson. He must have enjoyed it, because he got very angry when the nurse put him back, and had a minor spell. Luckily it was just due to him working himself up, and as soon as he settled in we left for the night.

We are hoping for another quiet day tomorrow, because Wednesday will be a big day for Kelson. He has consultations with two specialists, and he will turn 4 weeks old! It seems odd to Krista and I to hear people talk about Memorial Day approaching. The month of May has been such a blur. We keep joking that it is still April 25 to us, because our lives have been put on hold since then. We can't wait to get Kelson home and put this chapter behind us!

Four Generations

Kelson had another strong day today. Krista gave him a sponge bath this morning, and got to wash his hair again. He really seemed to enjoy bath time, and was very alert.

Around noon today, Kelson got to meet his Great-Grandpa Kuipers "Great Papa". Great Papa is 91 years old, and my parents brought him down to visit. It was the first time there were four generations of Kuipers men all in one room...at least in my lifetime.

It was my turn to hold at the 2 PM feeding. They shortened the feeding time from 2 hrs, to 90 minutes. He still gets 40 mL per feeding, just in a shorter amount of time. He still is tolerating feedings remarkably well.

Tonight we were invited to Kristas Aunt and Uncles for a cookout. It was a nice, relaxing evening.

Tomorrow we are really focused on getting started into even more of a routine. Krista and I both like structure in our lives, and have been struggling to get into a normal routine over the past month. Hopefully, Kelson will remain stable and get on a better schedule, so that we can too.

Strength

Kelson had one of the best nights ever. When we called the night nurse, she didn't even have any news to report.

Thankfully, this was followed by another great day. Kelson really
seems to be tolerating his bigger feedings. He is still eating over a 2 hour period, and then resting for an hour.

Audrey Angus stopped by for a visit and brought her two boys, both under the age of 3. I watched the boys while Krista took Audrey back to see Kelson. It was "practice time" for me being a dad of two.

After lunch, we got the opportunity to hold Kelson again. They want us to hold him during his feedings. Today was Kristas turn, so she held for the two hour feeding, and 15 min after to let his stomach settle. While she was holding, Kristas parents brought Claire. Claire got to meet Kelson face to face. She even got to give him a little kiss on the head when the nurses weren't watching.

We are continued to be amazed at all the people who tell us they read this blog, and who thank us for updating. It is obvious that Kelson can feel the strength and the comfort from everyone praying, and draws his strength from the overflowing support. Thank you, again, for helping be our strength on this journey.

Peaceful

We learned that Kelson had had a pretty restful night, so we decided to take some time this morning to hit some LeRoy area garage sales. We are happy to say Kelson has some more clothes now. Since he made his arrival over two months early, we weren't exactly prepared.

Kelson continued to stay fairly calm all day. He still requires suction about every 1-2 hours, which is normal for anyone who is intibated. We had a visit from Dee and Marshall Hurt. It is always nice for others to see the progress Kelson is making.

At about 3 PM, it was holding time. Krista allowed me to hold today, since she held him the majority if the time yesterday. I was only supposed to hold for an hour, but he was doing so well, I got to do it for almost 2! I was a lot more comfortable holding him today, and almost fell asleep. I had forgotten how peaceful it is holding a sleeping newborn.

Yesterday they had increased the feedings to 14 mL per hour, continuously. Today, they turned off his feeding for 3 hours, and he is now getting 40 mL over a two hour period, and will have another break from eating. They will continue to shorten the length of his feedings, and lengthening the time between feedings, so that eventually he will eat for about 30 min, every 3 hours. This will stretch his stomach, and get him ready for bottle feeding in the future.

Before we left tonight, Kelson had a few minor episodes. Luckily, they were kept under control with suction, and adjusting the vent settings.

In my mind, today was one of the best days we have had. Hopefully we have many more days like this to come.

A Great Day

We were very very blessed again today. Kelson had a good, but restless night. Luckily, when we got there to see him this morning, he was wide awake and very alert. Mike and Ria stopped by, along with my parents. We were glad we had visitors while he was so active.

After lunch, we finally got the moment we had been waiting for...holding!! Kelson is still on a ventilator, and feeding tube, but since the rest of his body is tube free, we could get our arms around him. They positioned Krista in a chair, rearranged the monitor wires, and placed Kelson in Kristas arms. The got him adjusted, and taped his vent tubes to Kristas shirt, so they wouldn't move much. It took Kelson a few minutes to settle down, but once he did he was quite content. Krista held him for over an hour, and we had a nice visit from Nicole Sperry-Daugherty. Normally, they only let one parent hold each day, but since we had waited so long, and he was doing so well, they let me hold him too....definitely a moment I will never forget!

Tonight, we left early to spend some extra time with Claire, and eat a nice meal brought over by Becky Builta.

After such a scary day yesterday, it is hard to believe we had such a great day today. We are looking forward to many more opportunities to hold Kelson.

Three Weeks

Today has been another emotional day. We learned that Kelson had a few spells overnight, but was resting when we got to the hospital. We received some great news. The morning chest X-ray looked good. This meant that there had been no fluid build up on his lungs after taking out the chest tube yesterday! Also, after spending 3 weeks on his back or side, he finally got to lay on his tummy. He seemed to like the move at first, but his breathing tube would kink when he tried to move his head. After a couple hours of tummy time, he had to go back to his back.

This afternoon Krista and I decided we would leave to run a few errands, but just as we were planning to leave, Kelsons numbers starting dropping. Suddenly there were about 6 people around his bed including the doctor.
They pulled out the intubation tube and put an oxygen mask on his face. As soon as the tube came out, his numbers started to rise. Kelson was breathing on his own. The nurse showed us the tube, and it had some pretty thick secretions in it that had been blocking his airway. After watching Kelson breathe on his own for a while, the doctor decided to try a nasal cannula. This would help him breathe without a tube in his throat. He did well on the nasal cannula, but it was requiring a lot of energy for him to breathe, and he was stressed. The doctor decided it was best to re-intibate, so Kelson would not wear himself out. He is now on the conventional ventilator and doing well.
Throughout all this chaos, we did get to experience a first...his first cry. It was really more of a squeak, but it was the first sound he has ever made. The breathing tube will cause him to be hoarse for a while, but it was pretty cool to hear.

That whole process took about two hours, but to Krista and I it felt like 10 minutes! Needless to say, we did not run our errands...

Since 4:30 Kelson has been resting quietly, and recovering from a big day. If he has a good night and early morning, Krista and I will FINALLY get to hold our son...and we can't wait!

Officially Homeless!

We got off to an early start this morning. Krista, Claire and I got to the hospital at 7:45, to have a quick visit with Kelson. He had a restless night, so he was fairly sedated when we got there. We were there for about 45 min, and then headed north for the house closing. We took Claire to Miss Marys for one last day there. After a quick stop by the house, for a last minute walk through, we went to the bank. The closing went extremely smooth, and we were done in about 20 min. It will be sad to leave behind our church and friends in the Piper City area, but we are excited to start a new chapter in our life.

After the closing, we took some checks to our bank, and stopped by to visit with Kristas boss. Then we grabbed a final lunch at Ne's Place and picked Claire up from the sitter.

When we got back to the hospital, the doctor was getting ready to re-examine Kelsons chest drainage tube, and potentially put a new one in. When he took the bandages off, he discovered that the suture was no longer holding and the tube had migrated out some. He pulled the tube out, and decided to wait to put a new one in. This was shocking to Krista and I. If everything continues to stay on course, they may not need to re-insert the tube. We were told not to be surprised if it goes back in, but so far, so good! This means we might get to be even more hands on time. However, he needs to be weaned off the Jet ventilator before we can actually hold him. His feedings have been increased again to 10 mL an hour.

All in all it was a really good day. Hopefully things continue and we have a good 3 week birthday tomorrow!

Kelson had another pretty quiet day. He is continuing to receive albumin to help thicken his blood. These treatments seem to help, but generally only provide a temporary fix.

The doctors have increased his feedings to 9 mL an hour. This is exciting because it means all of his nutrition is coming from breast milk, and not through an IV! Hopefully, without the IV fluids thinning his blood, he will not require the albumin to thicken it, and be to regulate himself.

He is still on the Jet ventilator, and still has one chest tube. The drainage on the chest tube is very inconsistent. Just when it appears to stop, they get a large volume off of it. His heart test was still good, and he is scheduled for an abdominal ultrasound tonight.

Today, I went back to the old house to pick up a few last things, and move the animals. Luckily, we had recently sold the last of our cattle in February, so all we had was a dog, cat, and fish. They all appear to be settling in nicely into their temporary home.

We are officially living with Kristas parents until we close on the new house. It is nice to be able to spend more time with Claire under the same roof.

Tomorrow we close on the old house. Hopefully all goes well, and we are able to move forward with the new purchase!

Mothers Day

Today was a pretty good day. Overnight, the Doctor was able to draw a large amount of fluid off Kelsons chest tube, so it will be staying in for a few more days. They have continued to wean Kelson off pain medications, and now receives all of his pain meds orally. He went over 12 hours without needing it, so he was very alert for the majority of the day.

Things were pretty quiet in the NICU, so Krista and I spent the majority of the day right next to Kelson. We help do whatever we can, and I'm pretty sure by the time Kelson is ready to go home, we could almost run the place!
It was nice of Kelson not to give his mom any scares on Mothers Day.

We have a few busy days ahead getting things wrapped up with the old house, and then we hope to be able to start getting into a routine...although we don't quite remember what that is like...

Overwhelmed with support

The day started with a good phone call to the NICU. Kelson had remained stable all night. Krista and I left early to get to the hospital. After checking on Kelson, and getting the morning report, I left to go help the moving crew. Krista stayed with Kelson.

As I pulled up to our house, I was shocked by the amount of cars. I never got a complete count, but there were over 30 people and 5 trailers ready to work. I couldn't even say HI to everyone. The entire process took less than 3 hours, including everyone eating lunch. I cannot even begin to thank all of the people who brought food, packed boxes, carried furniture, and cleaned. I wish I could list the names of everyone there, but I fear I would forget someone. Krista and I are simply overwhelmed with the support.

We also want to thank everyone who has sent cards and gifts. It has taken me over an hour to just go through all of our mail.

Kelson had a pretty good day. The St. Peters came to visit from Iowa, and Kristas cousin Dana came up from St Louis with her boyfriend Blake. Kelson still has a lot of secretions from his lungs that mess with the ventilator, but the medical staff has been working very hard to keep his breathing tube clear. They also turned down the amount of suction on his chest tube, and are working on weaning him off the pain meds. His feedings have started again, and he is up to 7 mL per hour.

It was great to see many friends today, and we are happy to have Kelson back on the right track. We are looking forward to Kristas first Mothers Day as a mother of Two!

A scary morning

Before going to sleep last night, I called the NICU for a brief update. The night nurse informed me that Kelsons pulse ox and heart rate had dropped, and they had to remove his breathing tube and do chest compressions until they could re-intubate him. She assured me that he was fine, and his breathing tube had just gotten plugged up. I was so tempted to jump in the car and drive back, but since Krista was already asleep, I decided to go to bed too. Needless to say, I didnt sleep well. I called back about 5:45 this morning, and his nurse told me he was fine the rest of the night.

Krista and I arrived at the hospital this morning and Kelson was resting. Just as we were getting ready to go for breakfast, the numbers started dropping again. The nurse and respiratory therapist started working on him, but his heart rate was not going up, so after a few minutes, they called for the doctor. The doctor ended up pulling out his breathing tube again and re-intubated him. Slowly Kelsons numbers returned to normal. The doctor assured us that there was nothing to worry about, and that these things happen all the time. However, it was quite scary to watch.

Kelson had started to look very pale, and we learned that his hemoglobin was low. This led to him having another blood transfusion today. He was also given surfactant to help his lung function.

The remainder of the day was much more relaxing. Kelson slept most of the day, resting from all the excitement of the morning. The good news from the day is that Kelsons chest tube had very little drainage, so they will likely turn the suction off tomorrow.

As we got ready to leave tonight, we were told that Kelsons last blood test showed that his pH was low again. They ran another test at 9 PM, and it had came up some, and they will test it again at midnight.

Hopefully we will have a lot better morning tomorrow than we did today. Keep the prayers coming!

An update from mommy

Trever has done a great job updating but he is taking a break from it tonight. Plus, we have access to a real computer with a keyboard tonight so we don't have to update on a phone or the ipad. So, I'll see if I can keep up with Trever's excellent writing skills.

Last night we spent our last night at our Chatsworth home. It is full of boxes with just a few things left to pack up. Claire gets a bit out of sorts when she is there since much of her stuff is already packed up.

It was a challenge getting out of the house this morning but once we did we dropped Claire off with Mary and headed to Champaign. We weren't really sure what we would find since they changed his vent last night after we had left. They did call us to update us over night but it's not the same as being there to experience it with Kelson.

Kelson seems to be a little iritated with the new ventilator. His pulse ox fluctuates a lot from high to low within a short amount of time which causes the machines to beep. They've been keeping him pretty well sedated so that he doesn't fight the ventilator and get agitated. They did mention shutting off the suction on his last chest tube tomorrow and hopefully taking it out within the next day or two. Once that chest tube is out we'll get to HOLD HIM!

We had visits from Kelson's Great Aunt Carol and Great Uncle Rog today as well as Sharon Monroe, Grandma, Gammy & Papa.

Trever took off around 2 today to head to our new house for the home inspection. Luckily everything looked good and Trever got to spend some time relaxing this afternoon. Mom and I spent some more time with Kelson and then picked up pizza for dinner. We're making ourselves home at mom & dad's for a while since it's not "too" far from Champaign.

All in all, it was a pretty uneventful day. Things have been moving pretty fast so we were due for a slow down. He's just hanging out looking handsome!

Two weeks old

Yes, it is very hard to believe it's already been two weeks since we first met Kelson. It really still feels like a dream. I called to check on Kelson as soon as I woke up. We learned that he had kicked out his IV in his foot, and they had to move it to his scalp. We knew this would be a possibility, because it is one if the best places to for it, but it is a little tough to look at. We had a little hands on time today, and took his two week picture with the birthday bear.

Kelson had a pretty restful day, and we had a nice visit with Barb Monk. About 4 PM, Kelson had a "spell". We had seen him about 10 minutes earlier and he was fine, but when Kirk and I went back, he had a team working on him. Apparently, there was free-air in the lining of his right lung, and was restricting his breathing. The Nurse Practitioner thinks it was due to the new ventilator, so she is switching him to a "Jet" ventilator. We had planned to leave a bit early tonight to go to an appointment, and the staff assured us it was ok to leave, and there was nothing to be concerned with. We hate leaving him, but know he is excellent hands.

We are spending the last night in our house with Claire. On Saturday the trailers and moving crew are coming to load everything. We will likely be staying in Leroy with Kristas parents for the next few weeks. Hopefully we will be in our new house soon, and be able to get it ready for Kelsons homecoming!

Kelson had another good night, and things were pretty calm when we arrived this morning. He has been spitting up some, but it has been pretty minor. We had a few errands to run, so we did those mid morning. Kristas college roommate Kate came by and took her out for lunch, and Ria stopped by for a quick peek. My parents also were there and brought me lunch.

We were settling in for a quiet afternoon, when we were told they wanted to change his ventilator. Since he has been at Carle, he has been on an oscillator vent, which gives very fast, short breaths, and keeps his lungs inflated. This causes his chest and stomach to continuously shake. We were expecting him to remain on this vent for at least a few more days, but the doctors decided he was ready to give it a try. He handled the transition nicely, and appears to be more comfortable. The new machine will allow him to be moved easier, and gives him a more normal breathing pattern. We also hope this will help ease the spitting up.

Ever since arriving in the NICU, we were told that it would be such a slow process, and we were told to expect two steps forward, and one step back. For the past week, it feels that Kelson is running a marathon, doing things days and weeks before the doctors and nurses ever expected. Nurses who have never even taken care of him stop by to check in and say how amazed they are with the progress. We keep bracing ourselves for a bad day, but I think Kelson is too determined to let that happen!

A quiet day

It was a nice feeling to wake up in our own bed this morning. Claire, however woke up on the floor next to her bed, with her head underneath it. We are not exactly sure why, but it was funny to see. We took Claire to Miss Marys house for a few days. Mary and Cierra have watched Claire since she was 8 weeks old, and this will be her last week with them. I'm sure they will have some fun-filled days.

It was a quiet day all around for us. Kelson had a good resting day, without much new to report. We are reminded that in the NICU, no news is good news. Krista and I got caught up on some phone calls, and took a walk to Einstein Bros Bagels for lunch. We spent the majority of the afternoon sitting by Kelson, reading and doing puzzles. They increased his feedings to 5 mL per hour, and decreased the IV nutrition.

This evening, Kelson met his Great-Grandma Builta, and we all went out for dinner at Cracker Barrel. Krista and I went back to tuck Kelson in, and are staying in Mahomet again tonight.

This is the earliest we have gotten to bed in two weeks, so we are anticipating a long, peaceful night!

A night at home

Kelson had a pretty eventful night last night. They decided to remove his left chest tube, and during this process he started spitting up for the first time. This caused them to temporarily stop his feedings. The Doctor thinks this was just due to him being agitated, and they restarted his feedings today at 4 mL per hour. He seems to be tolerating them well. I just spoke to a nurse, and she said his weight was up to 4 lb 12 oz. Kelson rested for the majority of the day, and got to meet Great Grandma Ficklin, and Super Great Aunt Sue. My parents brought Claire down this morning, and she was not acting herself. She was quiet, and extremely clingy. We decided to go for a walk and take her for lunch, to spend some special time with us. However she continued to act the same way, and even had a meltdown in the restaurant. This is very unusual behavior for her, but given the recent events, not unexpected. It was at this point Krista and I decided we needed to spend tonight at home. Several nurses encouraged and supported our decision, so at 7 PM, we tucked Kelson in, and came home. Even though it is hard to be an hour away, it is the best thing for Claire. We are welcome to call the NICU at at time to get updates. Claire was Very excited to see all of her animals, and to sleep in her own bed. Tomorrow we will take her to the babysitter like normal, and she will have a sleepover there. We hope to get to the hospital around 8 AM. The next step for Kelson is getting the right chest tube out, and then they will try to switch him to a traditional ventilator. We spent some time today visiting with the flight nurse who saved Kelsons life. It was nice to get to know her a little better. She has been in the NICU for 7 years, and a flight nurse for 4. She said that this is by far the most amazing case she has seen. Kelson is definitely making at impact on people, and inspires me every day!

The progress continues

It is hard to believe it's only been eleven days since Kelson made his grand entrance. As I looked back on the pictures from the last week and a half, I was in awe of the progress he has made. We were originally told that the tubes in his chest and abdomen would remain in place for several weeks. Imagine our surprise when we learned that the abdominal tube was removed last night, and they are hoping to remove the left chest tube tomorrow! They also increased his feedings again to 3 mL per hour. He continues to amaze all of the staff here. All of the nurses are in love with him and fighting over who gets to take care of him. He is becoming quite the little stud muffin. Today I made another trip back home to get a few more things, and help guide the moving crew. After having our house on the market for over a year and a half, we had finally accepted an offer on March 15, and close on it May 15. Our goal was to be moved into a new house before we had Kelson, but obviously that didnt happen. Luckily, we are blessed with great friends. The Rademaker, and Todd families are coordinating our move for us. This weekend is packing, and next weekend is the move. Most everything will remain in storage until we close on our new house, so we will be "homeless" for about two weeks. However, after living out of a suitcase for the last week and a half, I'm pretty sure we can handle a few more. As Krista and I settle in for the night, we can't help but question how anyone could get through a situation like this without Faith, Family and Friends. These are truly the three most important things in life.

A special visitor

Kelson had another strong day. The biggest news is that he is off both blood pressure medications, and had his umbilical line taken out. They also increased his feedings to 2 mL per hour. In addition to the feeding tube, he is still on the vent, and is getting nutritional supplements through his central line. He still has 3 fluid drainage tubes, one from each lung, and one from his abdomen. The fluid output is decreasing, but still draining.
Slowly, he is having more and more things taken away, and is definitely holding his own. Kelson had a very special visitor today. My sister Kyla came from Ohio, along with her daughter Maddi, and friend Lisa. For those of you that don't know, Kyla's husband Ron suffered a cardiac arrest on April 2. He was airlifted to Columbus, OH where he remained in extremely critical condition over 5 days. Ron has been on a slow steady road to recovery, and will be released from inpatient therapy tomorrow. Kyla had been trying to coordinate a time to visit, but obviously, has had plenty of her own family medical drama to juggle. It was great to see Kyla. She has been a great support, having just dealt with a trying situation. While Ron was critical, Kyla had been given a necklace by a woman in the waiting room that said "Believe". The necklace had not left her neck since that day. When she left, she took the necklace off and gave it to Krista, passing on the Belief that our family would indeed have another miracle. Even though it was a brief visit, we are glad Kelson was able to meet his Aunt Kyla. Lori and Lizzie, family friends, also came to peek in on Kelson. I know that Lizzie will have him out on the dancefloor as soon as he can walk. We ended the day at Buffalo Wild Wings, where we happened to see my Aunt Jeanie and Uncle Steve. After dinner we went back to tuck Kelson in, and are spending another night in Mahomet. In addition to all the Facebook and blog posts, we are starting to receive several cards and notes in the mail. We continue to be overwhelmed by the support, and hope we can return the favor to each one of you someday!

Food!

Another great day for Kelson. He gets stronger by the minute. They had been slowly weaning him off his Nitric Oxide, and today they took him off completely. That means there is one less machine hooked up. He is still on the oscillator vent, but on a very low setting. They hope to move to a regular ventilator soon. His blood pressure medication has been lowered again, and he seems to be doing fine. As you may have guessed from the post title, they started feeding Kelson today. The are "priming" his digestive system by giving him a slow continuous flow through the feeding tube. He currently is getting 1 mL per hour, so less than an ounce a day. We are able to get some hands on time 2-3 times a day while the nurses are working on him. Krista and I had a pretty low key day, with just a few visitors. We even got to take a brief nap this afternoon. We love visitors, but it was nice to have a relaxing day. Tonight, Krista went out to eat with her parents and Claire. I was able to sneak away for a couple hours to hang out with a friend, Ryan Rademaker. It was really nice to get out of the hospital, and have some adult time! We finally checked out of the guest house, since Kelson seems to be more stable. We are staying with Kristas Aunt and Uncle in Mahomet tonight, so we are about 20 minutes from the hospital. It will be hard not being able to see him as soon as we wake up, but we trust he is in good hands! We are looking forward to seeing the progress Kelson has made overnight. Thanks again to everyone who is expressing their love and support.

One week old!

Kelson continues to beat the odds, as he is now one week old! When we tucked him in last night, all of his bloodwork and stats were in a good range. I am thrilled to report that 24 hours later they have remained the same. The medical staff has found the correct balance of medications, so we are breathing a sigh of relief for now. His sodium was slightly elevated this morning, so they had to lower the hood on his isolate, and increase the humidity. Luckily, this is a minor issue. They also started giving him water through a feeding tube, to help hydrate him, and see how his stomach handles having something in it. He seems to be handling the water well, and we are hopeful to start on milk soon. We also had a good report from his EKG, and it appears the blood clot is resolved. They are still classifying Kelson as "Critically Stable", but he seems to be getting stronger by the moment. After some careful thinking, we decided it was time for Claire to meet her little brother. The visiting age is 3+, but they bent the rule a bit for us (she will be 3 in June). Krista and I have been preparing her by showing her pictures, and honestly answering her questions. When she arrived at the hospital, Krista took her to the gift shop to buy him a one-week birthday present. She picked out a blue Teddy bear. We asked the nurses to cover Kelson with a blanket, so all Claire would see was his face. Krista and I took Claire back to his isolate. She was definitely excited to see him, and wasn't scared at all. Marge, Kirk, and my parents all came back to pose for some pictures, and tell him Happy Birthday. I'm really glad we decided to let Claire see him. We want to set an example of always being honest with our children, and not sheltering them from the truth. We celebrated the birthday in style, compliments of Paul Leahey. Paul brought lunch from Biaggis for the entire family, and had a cake made, celebrating the joyous occasion. After lunch, Krista had her one-week follow up appointment with Dr. Austman in Gibson City. Her mom and Claire went with her, while I stayed back with Kelson. Krista was also able to stop by Gibson Hospital, to thank the nurses who helped deliver Kelson. While she was out, I had a surprise visit from Jennifer Ewing. Jennifer is on the National Junior Angus Board, and brought us a food basket from the entire NJAA board. It continues to amaze me how many people all over the country have been pouring out their love and support. At 3 PM, I was able to assist the nurse with the diaper change, and get a little hands on time. Krista and I also assisted with bath time tonight at 8:30. I washed his hair, and Krista changed the diaper and cleaned his mouth. We certainly enjoy and look forward to these little moments. I am looking forward to gettimg a solid night of rest, and we are praying for another strong day tomorrow. Happy one-week birthday Kelson Ray!! We look forward to many more celebrations!!

Waiting...

Today was kind of a blur, and it often times feels like we are living the same day over and over again. When we arrived at the hospital, Kelsons blood pressure was extremely low, and his blood numbers were pretty bad again. When we finally talked to the doctor he told us this was likely due to the blood thinner they were giving him to dissolve the clot, and due to the fact that he had been so heavily sedated. Luckily he did not seem too concerned, and was optimistic things would level back out. We were going to have to check out of the guest house, because they have a limit on the number of consecutive nights you can spend there. However, due to Kelsons critical condition, the nurse made a phone call and Demanded we stay another night, so we are across the street again tonight. Luckily, we have several friends and family who live 15-20 min from the hospital who have invited us to stay there, but we are spoiled being within walking distance. Finally, after being here 6 days, I made a quick trip back home. I was able to return some phone calls, check on the animals, and do a few other odd jobs. I also converted my car from a mobile office, to a mobile clothes closet, since we don't know where we are staying on a night to night basis. I was able to pick Claire up from the babysitters, and bring her down with me. It was nice to spend some time in the car with her talking, and singing goofy songs. Just as we were pulling into the parking garage at Carle, the tornado sirens were going off. I grabbed Claire out of the car, and we headed to the building. As we got inside, they were advising everyone to go to the basement. After hanging out in the basement for a while, we were given the all clear. I went upstairs, and walked back to see Kelson. However they were in the middle of changing his chest tubes, and putting in a central line, so I was told I would have to wait to see him. When Krista and I finally got to to back in, we saw one of the most heartbreaking things ever...Kelson was crying. With the tube down his throat, he can't make noise, but it was obvious in his face that he was in pain. Krista and I were able to console him, and let him know mommy and daddy were near. He has just enough room in his mouth that we are able to hold a small pacifier up to his lips. He can't really suck on it, but enjoys having it in his mouth. Kelson seems to be able hold his body temperature, so they have raised the hood on his isolate, which will allow us more access to rub on him and give him kisses. Before we tucked him in tonight, all of his stats were acceptable, and many of them were very good. He appeared to be resting peacefully. We were also able to put his prayer cap on his head. Kelson continues to be blessed with many visitors, and today's list included Mike and Ria Voelker, Kristas Uncle Roger and Aunt Carol, my cousins Will and Kelly Gerber, Darcy N, and Jan V. Earlier today I was on the phone with a friend, expressing my frustrations, and saying that my patience was running thin. Shortly after that conversation, I heard a song on the radio by John Waller called "While I'm Waiting". It really helped put things in perspective for me, and I'm including the lyrics on the blog. These words will be my prayer in the days to come. We are looking forward to a great day tomorrow. Please continue to pray for Kelsons healing, and for everyone involved, pray for their patience. We will wait as long as we have to in order to bring Kelson home. I'm waiting I'm waiting on You, Lord And I am hopeful I'm waiting on You, Lord Though it is painful But patiently, I will wait I will move ahead, bold and confident Takeing every step in obedience While I'm waiting I will serve You While I'm waiting I will worship While I'm waiting I will not faint I'll be running the race Even while I wait I'm waiting I'm waiting on You, Lord And I am peaceful I'm waiting on You, Lord Though it's not easy But faithfully, I will wait Yes, I will wait I will serve You while I'm waiting I will worship while I'm waiting I will serve You while I'm waiting I will worship while I'm waiting I will serve you while I'm waiting I will worship while I'm waiting on You, Lord