We were prepared to make lots of choices as parents. Choosing a name. Choosing a babysitter. Choosing their first show pig and heifer. Choosing where they go to college...well I guess there really is only one choice there. But choosing the color of your kids first hearing aid..that's not something I ever expected to do.
I mean, really, how do you make that decision. What color is he going to like in 3-5 years? Do you pick one that will blend in with his skin and hair? Do you pick a color that is going to stand out? Do you pick purple because that's what his sister would pick if she was getting hearing aids?
If you want to cast your vote, you can check out your choices here.
While Trever is off choosing which suit to buy for his work trip next week, I'll be pondering be pondering beige or blue.
Monday, December 3, 2012
Choices
Posted by Trever & Krista at 4:32 PM 9 comments
Wednesday, November 28, 2012
6 months, 7 months and a trip to the booth
Posted by Trever & Krista at 5:32 PM 1 comments
Tuesday, October 23, 2012
A Blessing for Kelson
Posted by Trever & Krista at 6:16 AM 3 comments
Sunday, October 14, 2012
5 months plus
A friend recently sent an e-mail that discussed using the word "busy" when someone asks how things are going and it has continued to pop in my mind over the last few days. Several people continue to ask "when are you going to update the blog?" or tell us "we're going through Kelson withdrawls". So, instead of using the word busy as an excuse to why we haven't blogged, I'm going to tell you that blogging is not a priortiy these days. We are living life. Finding our normal. Making our house a home. Trying to be the best we can be at the careers we have chosen and raise two semi-well behaved, somewhat polite kids while attempting to keep them fed and bathed on a regular basis.
So, what have we been up to since month 5....
Kelson has been growing like crazy! He's starting to eat us out of house and home and we're anxiously awaiting the ok from Dr. A to give him some "real" food. He has speech therapy on Wednesdays and physical therapy every other week. He enjoys chewing on his hands, smiling all the time, and is quite the wiggle worm. Kelson was 11 pounds 3 ounces at his 5 month check up.
What else has been going on around these parts since our last entry? We've had a couple weeks off from football games but filled them with other outings. Last weekend we made our maiden voyage to Curtis Orchard with Trever's sister, Kyla and her two kids. Everyone enjoyed themselves and we came home with pumpkins and apple fritters. The kids really enjoyed playing together, running and getting muddy. Kelson was a good sport through most of it.
After the orchard we headed to Rantoul to celebrate with one of our favorite 2 year olds. Hunter had a construction themed party and all of our kids enjoyed playing with his toys.
Yesterday we lounged around the house and worked on little projects around the house before heading to Alex & Theo's house for a hog roast. We enjoyed catching up with some Piper City friends and introducing many of them to Kelson for the first time. Claire really enjoyed playing with Alex and taking a ride on his 4-wheeler.
I caught this picture this morning before church. Claire loves to hold her little brother...for short amounts of time...and Kelson humors her...sometimes. They were both in great spirits this morning and it shows here.
I also have a few prayer requests to share with our faithful blog followers. Before our time in the NICU I probably couldn't have named a single person that I knew well that had been through a NICU or pediatric hospital stay of their own. Since that time it's like premie and sick babies have been the theme.
I want to share my friend Lydia's blog over at Corn Fed Kansan. Her little girl, Lorena, was born around 28 weeks gestation and wasn't due until around December 1st (I think my stats are right). But, she's a little fighter and doing great according to her mommy's blog. One of the hardest parts for this family is that they live 2 hours from the hospital and don't get to visit as often as they would like. Please keep them in your prayers.
Also, prayers would be appreciate for little Carter who had a very rough start with a diagnois of Cystic Fibrosis and had a large portion of his intestines removed shortly after birth. I believe that his mommy & daddy got to take him home this weekend.
...for Gabrielle who was suppose to be born around Thanksgiving in Arizona but decided to make her appearance while in Illinois visiting.
...and finally for Laia who at about 10 days old has been fighting a fever for a few days and took an abulance ride to Peoria.
We know that all of you have prayed for us and we have truly seen the miracles that God can do! Please pray for our friends that they may see those same miracles in their little ones.
Posted by Trever & Krista at 4:02 PM 2 comments
Monday, September 24, 2012
Dance, Football, Therapy...REPEAT
We have also been church shopping which is a bigger challenge than I expected. Soybean harvest has started so I am on call 24/7 these days and pray that I beat all of the combines to the fields I have to inspect. Claire took a combine ride with Uncle Kenneth and then hung out with grandma for a while tonight.
Posted by Trever & Krista at 8:08 PM 4 comments
Monday, September 10, 2012
Preschool
Posted by Trever & Krista at 6:58 PM 1 comments
Monday, August 27, 2012
Auditory Nueropathy
Kelson had his second appointment with the audiologist today and had another ABR (Auditory Brainstem Response) test. They want him to sleep through the test so we are to bring him hungry and awake. He wasn't real interested in falling asleep at first, but gave in eventually.
They put electrode type things on his forehead and behind his ears. Then they put a tool in his ear that makes different noises. I'm not sure what exactly is happening but I can hear a difference.
We got pretty much the same results as we did at our last visit. It appears that Kelson's ear is working but his brain is not responding in a synchronized way. I asked the audiologist what exactly that meant and she compared it to a radio that wasn't quite set on the right station. You can understand part of what is being said, but there is a lot of static.
Apparently Auditory Nueropathy is not a real common thing (much like the other issues that Kelson has already proven he was too tough for, like they hydrops and they chylathorax). We visited with a lady at ECHO today that has worked with other patients with this diagnosis and she said she had worked with 8. All of them had different challenges associated with the auditory nueropathy and different things helped them to cope with it. Some have hearing aids, some have had cochlear implants, some use American Sign Language some use cued speech. Each child is different, and as much as I hate the idea of waiting, that's all we can do right now. Hopefully Kelson will mature out of some of these issues, and if not, we'll just have to figure out what works for him.
We also got a call from Early Intervention today (FINALLY). The coordinator will be coming Friday morning to meet with Trever and me. After that we will meet with a therapist to determine what types of therapy Kelson needs. We have been recommended for speech and hearing help as well as developmental help. They will work with Kelson on these things, but they will also help our family and friends to get the resources that we need to work with Kelson. If we need to learn sign language, they will help us get the resources we need. They will work with Claire for ways to play with Kelson to develop his communication.
This is just another hiccup that we'll overcome together.
Posted by Trever & Krista at 6:59 PM 7 comments
Sunday, August 26, 2012
4 months
Surprise! I finally updated the blog. I'll do my best to keep you up to date from here on out and I hope to go back and add some pictures to the blog as time allows. Needless to say, things have been a little crazy around our house for the past couple of months. Both of us are back to work full-time (minus doctors appointments) and both kids are going to the sitters (Kelson's first day picture below)!
Since your update at 3 months, our little man has been a growing, smiling, bright eyed delight. He keeps his eyes on his big sister, likes to cuddle with his mama, and upside down in daddy's arm is where he likes to be when the witching hour comes. (Although he seems to be outgrowing his fussy times....thank you God!)
We've had a couple of different doctors appointments since our last update. Last week he was up to 9 pounds 13.5 ounces and got 2 more shots and an oral vaccine. He's still a little guy but he's growing and that is what is important. We met with an ear nose and throat doctor at Carle to check on his hearing but really didn't learn much. We go back to to ECHO tomorrow for another appointment with the audiologist. Hopefully I'll update after that.
Claire spent a week at Vacation Bible School and really enjoyed herself. She was a little timid at the Friday night program, but rocked it on Sunday!
Trever made a couple of trips to Springfield for the State Fair. I figured I had missed enough work I didn't need to take another day for "fun".
Trever and I took a trip to chicagoland for the wedding of my good high school friend Livi. There four girls from our group there...they forgot to tell me to wear black! :)
I got a girls night out with couple of college friends and can't wait to do it again...soon!
Trever preached two sermons.
Claire went to practice school...or as normal people would call it...pre-school open house.
And finally, this weekend consisted of fun at the Fall Festival, dinner with our new neighbors, checking out a new church, the Builta reunion, and school shopping with Claire.
Posted by Trever & Krista at 6:46 PM 3 comments
Wednesday, July 25, 2012
3 months
Posted by Trever & Krista at 7:27 PM 3 comments
Sunday, July 15, 2012
No News is Good News!
I know, I know there hasn't been a blog update in a while, but as the old saying goes; No News is Good News.
It is hard to describe how peaceful it is being together as a family of 4. Kelson is pretty easy going. He has been sleeping well, 4-6 hours at a time during the night, and eating 2.5-3 oz at each feeding. He does get fussy from time to time, but loves being held, and his vibrating bouncy seat.
We had his first appointment with Dr. Austman, who delivered him, on Tuesday. Kelson weighed 7 lb 14 oz and was 21 inches long. He had gained 9 oz in a week. If she hadn't known his history, I'm pretty sure Dr. Austman would have not known there had ever been anything wrong with him.
We had a pretty full weekend starting Friday night. Claire had some friends visit from her former daycare in Piper City. We had a great night with Miss Cierra, Miss Audrey and their crew. Saturday brought our first family cookout hosted at the new house. Kristas Aunt Carol was home from Florida, and her Aunt Janet came down from Chicago, so we offered to host lunch for the crew. We had 13, including Kelson, and enjoyed a great summertime meal of cheeseburgers, sweet corn, melon, blackberries, zucchini, pasta salad and brownies.
Today Kelson made his first trip into "Grandma Greats" house. We even left him for a couple of hours to spend more time with Great Aunt Carol.
This week is looking to be a busy one, and hopefully is rounded out by a trip to the Iroquois County Fair, and a first birthday party. It is great to be back enjoying the simple things in life. You don't realize how much you take these things for granted...
Posted by Trever & Krista at 8:30 PM 2 comments
Friday, July 6, 2012
ECHO
Today Kelson had his follow up hearing test at the ECHO center (Expanding Children's Hearing Opportunities). The goal was to have him in a deep sleep during the test. When we arrived at the center, we went to a room with a rocking chair to feed Kelson and make him sleepy. They attached electrodes to his forehead and behind his ears. Shortly after getting a full belly, Kelson was asleep in my arms and they were able to begin the test. They placed a tube in his ear that was attached to the computer to produce sounds. Kelson was an excellent patient.
Unfortunately the results of the test were not what we were hoping for. Kelson has a hearing impairment called "Auditory Neuropathy" (AN). His ears can hear sounds, but the nerves have trouble recognizing sounds. Basically there is a miscommunication between his ear and his brain. We will not know the severity of his condition until he continues to develop, but hopefully early intervention will help the prognosis. We were told that this condition could improve as Kelson matures, and there are devices that can assist with hearing down the road. For right now we just need to wait and see.
Even though this was disappointing news, after what we have been through, this is a minor complication. Kelson has broken so many belief barriers, that I'm sure he won't let this slow him down. We know for a fact that God will not give us more than we can handle.
Otherwise Kelson is doing great. Last night he ate at 10 PM, went to sleep, ate at 2:30 AM, went to sleep, and woke up around 5:30. Hopefully he has his days and nights straight so we can continue to get a pretty full nights sleep. It is exciting to have our first weekend home together!
Posted by Trever & Krista at 7:48 PM 7 comments
Thursday, July 5, 2012
Family Time
Wow, the past two days have been great.
Tuesday night we tucked Kelson into his pack n play in our room after his bottle and he was sound asleep. He slept for 5 hrs, before I finally woke him up to eat. This is the first time he was ever really able to sleep in a dark, quiet place, since the NICU is busy 24/7. I got up to feed him around 2:30 AM and he was wide awake, so I spent some time hanging out with him on his blanket. He ate again at 6 AM, and after I fed him, I woke Krista up so I could catch a few more hours of sleep.
Kristas parents came and took Claire to the 4th of July parade in Bellflower, and Kristas grandma came over to hold Kelson for the first time. We ended up having an impromptu cookout at our house with Kristas family. Everyone left after lunch, and Krista, Claire, and Kelson all laid down for naps. I decided to do something I hadn't done in a looong time...watch a movie.
After everyone was awake, we took Kelson on his first outing. We went to our friends, The Todds, so Claire could swim in their new pool. Kelson and I hung out in the A/C while Krista and Claire swam. We went back home and got everyone ready for bed. This time it was Kristas turn to get up for the feedings.
Today I went and got a truckload of boxes and furniture out of storage, and we worked on unpacking and putting stuff away. Claire went to Miss Connies, so we could actually get some stuff accomplished. Kelson has really been easy going since we brought him home. As long as his belly is full, and his pants are clean, he is pretty happy.
Tonight we had more family come to visit. Kristas Aunt and Uncle brought pizza, and 3/4 of the Voelker clan came over.
Tomorrow we will be going back to Champaign for Kelsons audiology appointment. He did not pass the screening in the NICU, so we have to do some more investigating. It is a three hour test, and he is expected to sleep through it...keep your fingers crossed that he cooperates!
Posted by Trever & Krista at 8:09 PM 2 comments
Tuesday, July 3, 2012
Home
Shortly after Kelsons morning feeding, the nurse gave him a sedative and we walked with Kelson down to MRI. Thankfully the sedation kicked in and they were able to perform the test.
After the MRI, Kelson was very groggy, and confused. The sedative seemed to make him a bit loopy and frustrated. Eventually he calmed down and fell back into a good sleep.
We spent the majority of the day just sitting around, waiting for the "green light" to go home. We continue to have doctors and nurses with 20+ years of experience say things like "I've never seen a baby as sick as he was survive", and "I feel so blessed to have worked on your son". Needless to say there were a lot of emotions expressed today, and tears shed.
Finally at about 2 PM the doctor had reviewed the MRI, and told us we were officially discharged. Even through we were free to go, our nurse advised us to wait until he had fully woken up, and eaten, so he wouldn't fuss on the drive home. Finally at 3:30 Kelson woke up and was ready to eat. After getting his belly full, we put him in the car seat, and loaded him and his belongings into the wagon. After one more tearful walk around the NICU, we were out the doors. I pulled the car up to the entrance and Kelson was wheeled out to take his first breath of fresh air.
Kelson handled the ride home well, and we spread out a blanket in the living room and all sat in awe....Kelson was home. Kristas parents brought Claire over, along with a delicious dinner. Claire was sooo excited to play with her new "toy" and doesn't understand why she can't hold him by herself, or feed him by herself. I'm sure she will adjust just fine.
Tonight we could hear the Downs fireworks, and Krista and Claire went out to watch them in the yard. What a great way to celebrate and amazing day.
We will continue to update the blog, but eventually it will not be every day, so feel free to check back often. Thank you for taking the time out of your day to join us on this journey. Every good thought, comment and prayer helped give us strength and helped us be able to bring our miracle home!
Posted by Trever & Krista at 8:32 PM 12 comments
Monday, July 2, 2012
Tomorrow??
Kelson was wide awake for most of the morning. There were lots of nurses stopping by to check on him, and asking me when he was going home. Unfortunately, I still did not have an answer. The doctor did not have an answer during the morning rounds. Finally I had an opportunity to visit with the doctor, and he said he would discharge us tomorrow, pending the results of the MRI. The MRI was scheduled for 1:30 PM. They took Kelson down for the test. The goal was for Kelson to be asleep and to lie still in order for the scan to be accurate. Apparently, Kelson did not want to cooperate, and therefore did not complete the MRI. They are going to repeat the test tomorrow under sedation. I really dont understand why they did not sedate him today, but they must have assumed they could reason with a 10 week old and just expect him to lie still. Kelson is still eating well, and had his biggest feeding last night, eating over 3 oz in one feeding. Tonight he weighed about 7 lb 5 oz. He is almost up to his birth weight of 7 lb 12 oz (over 4 lb of which were fluid). Tomorrow Krista and I have full expectations of leaving the hospital with Kelson. We are not sure what will happen with the MRI, or what time we might get to leave, but we are planning on Kelson taking his first breath of outside air, and spending the night in our home. I'm guessing we won't sleep a wink though!
Posted by Trever & Krista at 8:42 PM 3 comments
Sunday, July 1, 2012
We're ready...
Last night we got the nursery pretty well ready, and this morning I got up early to clean out the car. After 10 weeks of driving back and forth from the hospital, it had gotten quite messy. It is now vacuumed out, wiped down, and ready for the car seat.
Apparently Kelson had still been very fussy overnight, so he started on some gas drops today. As far as we can tell, they are working like a charm. Kelson was very calm and peaceful today. Tonight he almost ate 3 full ounces.
Claire got to spend a little time with Kelson again this weekend. She is definitely ready to have some normalcy again.
Tomorrow Kelson is scheduled to have a routine MRI prior to being discharged. We are hoping to talk the doctor into sending us home on Tuesday, but have not heard anything official yet. It is tempting to just sneak him out the door, but I'm guessing we would set a few alarms off...
Posted by Trever & Krista at 2:53 PM 4 comments
Saturday, June 30, 2012
Day 67
Today was just another "typical" Saturday for us. Claire and I slept in while Trever started mowing the yard. We shipped Claire off to grandma's house and Trever and I headed to the hospital. Kelson is one of the healthier babies right now so there are very few changes happening. However, we have noticed some fussing during his bottles so we are switching up his diet once again. We are going to see if some gentle formula will help. This is something a parent of a "normal" newborn would deal with too. We are getting Kelson's room ready for him but we have a ways to go. The poor kid finally has a few diapers, a new bottle, and some clothes hanging in his closet. I guess the pains of being the second child are already starting. We are still hoping to have our family of four under the same roof by the 4th of July. We aren't real sure what the doctors have in mind for us yet but it shouldn't be much longer. In the mean time we will keep trying to be present for Claire, keep making our house a home, work as many hours as we can, be with Kelson at the hospital and continue to live the dream.
Posted by Trever & Krista at 7:05 PM 1 comments
Friday, June 29, 2012
Today was a pretty good day. Kelson has been eating up a storm. He enjoys getting the good formula and wants to eat all of the time. I stopped to stock up on some supplies at home (diapers, wipes, etc). This afternoon Kelson was a bit fussy, so he got a dose of Tylenol in case he was having a little pain. They did another chest x-ray today, and everything still looks clear!
Dad also got released today. He seems to be doing well also, and goes back to the doctor on Monday.
Tonight we met with the developmental doctor. He examined Kelson, and saw absolutely nothing wrong. He said after reading his chart, he was amazed Kelson had survived. They will continue to monitor Kelsons development, as we will not know any long term effects until his brain continues to develop.
Hopefully we can get a discharge date soon, so we can make plans for next week!
Posted by Trever & Krista at 3:41 PM 3 comments
Thursday, June 28, 2012
Pig show
Today all three of us left home early to travel to Springfield for the CPS Summer Pig Show. Our niece Maddi from Ohio was participating in the show. It was a great way to spend a hot summer day. Claire had a blast playing with her cousin. Krista and I left for the hospital around noon, and left Claire with my mom so she could play more.
Kelson had a great night and day recovering from his surgery. He had a dose of tylenol after surgery, and again at 7 PM last night, but since then has not needed any pain meds. It continues to amaze us how strong our little man is. He also hasn't missed much in terms of eating, and is pretty much eating on demand, or every 4 hours, whichever comes first.
Today the doctor decided to skip a step in the formula transition, and put him on straight EnfaCare today. As long as Kelson continues to thrive we will be coming home Tuesday or Wednesday, July 3rd or 4th.
As ready as we are, it will be strange leaving the wonderful people we have grown to love in the NICU. They are truly a special class of people, and we are forever grateful to them.
Posted by Trever & Krista at 8:11 PM 5 comments
Wednesday, June 27, 2012
Surgery
Today Krista and I arrived at the hospital around 9 AM for Kelsons surgery. When we got there he was already on a special warmer that he would ride in to go downstairs, and had an IV in for fluids. We spent about an hour and a half cuddling with him. He was very calm, even though he hadn't eaten since about 1:30 AM. The surgeon arrived at about 10:30 and did his assessment. He was still able to feel the hernia, so they started prepping him for surgery. We were able to ride down with Kelson to the second floor before they took him into the OR.
We stopped in for a quick visit with my dad and he seems to be doing well. Then we picked up lunch and went back to the OR waiting room to eat. The time passed pretty quickly and the doctor came to talk to us. He said everything went great and he would see us in August. We then headed back to the NICU to see for ourselves.
We had expected Kelson to be very tired, but he was very alert. He definitely had some pain, but seemed to be tolerating it well. We spent the majority of the afternoon holding him and trying to keep him calm. Krista gave him a little sponge bath, and we were able to put some clothes back on him. Finally, at 6 PM he was able to eat again, and boy was he hungry!
Hopefully he continues to eat well, heals, and tolerates the diet change...then we can relearn what normal is!
Posted by Trever & Krista at 8:18 PM 3 comments
Tuesday, June 26, 2012
Today was a bit more normal for us. Krista and I did our normal routine with me going in early, and Krista going in after lunch. Kelson is still eating well, taking about 60-100% of the total amount he is supposed to eat.
Dad is doing ok, but is in quite a bit of pain. Hopefully he recovers quick because he doesn't sit still well.
Tomorrow Krista and I will head in together to be with Kelson before his surgery. He is scheduled for 10:30 AM. They said the entire process will take about an hour, but the actual surgery should only last about 15 minutes. Hopefully all goes well and we will be one step closer to home!
Posted by Trever & Krista at 8:18 PM 3 comments
Monday, June 25, 2012
Long Day
The alarm clock was set early this morning so I could be at the hospital by 6:30 AM. However, today Kelson wasn't the first patient for me to visit. In March, my dad had an elevated PSA test, and learned that he would need his prostate removed...today was his "lucky" day. Lucky for us, he is at the same hospital Kelson is at, just on a different floor. They took Dad in for surgery about 8 AM, and then we went to visit Kelson.
Kelson continues to thrive and improve on his feedings. He eats more "on demand" every 3-4 hours, and can take as much formula as he wants...within reason. This afternoon Krista was feeding him and he finished one bottle and started working on his second. He had never been offered much more than 65 mL, but before we knew it he had consumed 87 mL! I'm pretty sure he would have taken more, but the nurse advised us to hold off. We thought for sure he would spit up, but he managed to keep it all down.
Originally we thought we would be sent home on the "special formula", but the doctor today informed us that he wants Kelson to be eating regular preemie formula (EnfaCare) before they release us. They have already started transitioning him over to EnfaCare more today, and expect it to take 9-12 days before he is completely transitioned. That would put us getting discharged between July 3-6. That is still assuming everything goes to plan. It is exciting to have some goal dates in mind.
As for Dad, the surgeon said everything went as well as could be expected, and he seemed to be recovering well this afternoon. Hopefully the medical drama is nearing it's end in our family!
Posted by Trever & Krista at 8:24 PM 4 comments
Sunday, June 24, 2012
No more tubes!
What a great Sunday morning!
Everyone woke up well rested and in a good mood. Claire was excited to go see Kelson today, but had to play nurse first. I was the lucky patient, and her cat Congo was the doctor. It was hilarious listening to all of the things coming out of her mouth.
We got to the hospital around 10:30, and Kelson was asleep in his swing. Claire thought it was neat to rock him in it. At 11:30 we gave Kelson a bath, and Claire was able to watch and help. The nurse also removed Kelsons feeding tube, so he is now 100% tube free. The only thing attached to him is the heart/respiratory monitor.
Kelson ate the majority of his bottle at noon. As we were finishing up the feeding, the flight nurse Sara asked us if we wanted to tour the helipad/helicopter that Kelson rode in. We took the elevator up to the roof. It was really neat to learn more about how they transport babies, and how everything works.
Kelson took another full bottle at 3 PM, and stayed awake for a long time. We left the hospital around 5 and went to Menards to buy Claires swing set. If anyone had 7-9 hours of free time, you are welcome to come assemble it for us!
Posted by Trever & Krista at 12:22 PM 6 comments
Saturday, June 23, 2012
Day 60
We got to catch up on a little sleep this morning before starting our day, but then it was off to the hospital. We dropped Claire off at Kristas parents along the way.
Kelson had ate his entire bottle at 9 AM. At noon he was still pretty tired, and not too exited to eat, but he managed to finish about 2/3 of the bottle.
After lunch it was time for the car seat test. We strapped him in and he sat for an hour. It was pretty uneventful, which meant he passed.
At 3 PM Kelson was ready to eat again and polished off his whole bottle.
Tonight we headed to Gibson City for the Voelker summer party. Claire had a blast riding scooters, jumping on the trampoline, and running around.
I just spoke with the night nurse, and Kelson has continued to eat well for her, and he hit the seven pound mark on the scale tonight!
Posted by Trever & Krista at 1:38 PM 1 comments
Friday, June 22, 2012
Eat eat eat
Last night after I posted I went upstairs to brush my teeth. When I tried to turn on the water, nothing happened. At first, I just assumed Krista had broken the faucet, and was too embarrassed to tell me, so I went downstairs. However, there was no water there either. Oh the joys of home ownership. I tried a few different thing in the house, and nothing worked, so I decided it could wait until morning and went to bed.
Luckily, we figured out the problem at about 8:30 AM, and were able to restart our water pump. Thankfully it was a quick fix.
Kelson ate a full bottle at 6 AM for the nurse, and ate about half for me. He had a follow up eye exam, and again everything looked good, but he didn't like it very much.
We gave Kelson a bath before his 3 PM, so he was wide awake to eat. He finished his full bottle for Krista.
Yesterday he ate 75% of his feedings by mouth. If he does that again today, they might pull the feeding tube, an just let Kelson eat what he wants.
We also brought in the car seat today, so we can do the car seat test. Because of the angle of the seat, Kelson has to sit in his car seat for an hour without dropping his heart rate. If he has issues with this we would need a car bed, but there shouldn't be any problems.
Tonight we went to Onarga and Gilman to meet with my parents and pick a few things up. It made for a late night, so we are definitely ready for the weekend.
Posted by Trever & Krista at 9:11 PM 2 comments
Thursday, June 21, 2012
Someone must have told Kelson what I wrote about him last night, because he really had his act together today. He finished his entire bottle (65 mL) in 20 min this morning. Then he decided to be a real show off and finish the bottle Krista gave him at 3 PM. It won't be long until he can get rid of the feeding tube for good.
Tonight Kelson weighed in at 6 lb 15 oz. By this time tomorrow he may break the 7 pound mark!
Posted by Trever & Krista at 7:41 PM 4 comments
Wednesday, June 20, 2012
Thank you
Thank you to everyone who left comments! It was amazing to watch them come in throughout the day and night. I can't wait until Kelson is old enough to read them all himself.
Kelson turned 8 weeks old today. Along with this big milestone, came a less pleasant event....2 month vaccinations. I'm sure as many needle sticks he has had thus far, he probably didnt notice these much. Kelson has decided to switch things up a bit on when he wants to eat. This morning he really had no interest in eating, but did better at noon and 3. Then tonight at 6 he ate the full bottle. I guess he is getting to be a typical baby, and from now on everything will be on his terms.
Krista got to give another bath tonight, and apparently Kelson had a big audience. Kristas parents, grandma, and aunt and uncle were all there to watch.
Tonight Claire and I picked raspberries, and then all 3 of us sat out under the stars. Definitely a night to enjoy!
Posted by Trever & Krista at 8:31 PM 4 comments
Tuesday, June 19, 2012
Leave a comment!
Kelson had another big eating day. He is now being offered a bottle on all 8 feedings, and whatever he doesn't finish goes through his feeding tube. He ate a full bottle at 3 AM and 6 AM. He took 80% at 9 AM and 87% at noon. At 3 PM he was too worn out to eat, but ate well again at 6 PM. He now weighs 6 lb 14 oz.a
Claire also got to go to the doctor today. She had her 3 year old checkup with Dr. Austman, and a physical for preschool. She had to have some blood drawn, and didn't even cry! She now weighs 35 lb and is 40 inches tall.
We know there are people from all over reading the blog, but we have no idea how many people, or who those people are. We are wanting to put the blog postings into a scrapbook or journal for Kelson, and think it would be neat for him to look back and see all of the support he has had since the day he was born.
Please do us the favor of typing a comment below with at least your name, and City, State so Kelson can know how loved he is. Thank you in advance!
Posted by Trever & Krista at 8:00 PM 83 comments
Monday, June 18, 2012
So far, so good
It was a busy Monday morning, as Krista left early for work, and I got Claire fed, clothed, and out the door by 7:45. Today was Claires first full day with Miss Connie, and she seemed pretty excited. Connie has a pool, so Claire got to take her swimsuit and floaties.
I was actually early for the 9 AM feeding...not too bad for a Monday. Kelson is now one of the more stable babies in the NICU. He still shares a nurse with another patient, but often times has a "borrowed" nurse from the pediatric unit. He still gets great care, but we miss having some of the more familiar NICU nurses. Kelsons day just revolves around eating. The doctors are wanting him to try a bottle at all 8 feedings. This morning he ate 56/60 mL for me, and took 35 for Krista at 3. They have also increased his feedings to 65 mL, just over two ounces.
We received even more good news today. Kelson had a chest x-ray, and so far there has been no fluid re-accumulation! He has been off his medication for 5 days, and is doing great. They will keep a close eye on things for another week and a half, but so far, so good!
Posted by Trever & Krista at 8:02 PM 1 comments
Sunday, June 17, 2012
Fathers Day
I woke up early this morning and did some more organizing and cleaning before the girls got up, and before we left for church. As I was working in the kitchen I heard a noise coming down the stairs. I was greeted by Claire, holding her new box of Princess Dominos, and her pink puppy dog Kikee. She was wide awake and ready to play. Even though we were kinda rushed to get to church, I laid down on the floor and played a quick game. It was a great way to kick off Fathers Day.
We went to the Bellflower United Methodist Church, the church Krista grew up in. Claire really enjoyed going down for Sunday School. After church, Kristas parents took Claire, and we headed to the hospital. Normally, Kelson eats the best at the 9 AM feeding, but he had not eaten very well today. Apparently, he was saving up his energy for me. Kelson ate his entire bottle at Noon! The only time has taken a full bottle has been for the nurses, so I think he was waiting until today to prove to me that he could do it. It was another great Fathers Day moment.
Kristas parents came just as he was finishing his bottle. He was wide awake, and Claire got to help me hold him, and put him in his swing. We had lunch in the cafeteria before they went home for naps.
Krista and I stopped to pick up a few items on our drive home, and then headed to Grandma Builtas house. Kristas grandmother was serving Fathers Day dinner. It was a great way to wind down the day.
I certainly enjoyed my first Fathers Day as a dad of Two. I look forward to many more years to come.
Posted by Trever & Krista at 12:10 PM 2 comments
Saturday, June 16, 2012
A fun day
Claire had a big day today. This morning we inflated her new pool and filled it with water, so it could warm up to use later this weekend. Then we headed to Fisher to meet up with the Todd family. Claire spent the day with her friends Jeremiah and Andrew, playing on bouncehouses, and swimming in their new pool.
Krista and I headed to the hospital. We spent the rest of the day with Kelson. Kelson can now take bottles 6/8 feedings. He ate big at 9 and 12, but was too tired to eat at 3. Krista and I spent much of the afternoon watching the required discharge videos, just to get them over with. We also had a surprise visit from Dee and Marshall Hurt.
Kelson has consumed the entire supply of breastmilk Krista had stockpiled, and is now getting two different types of formula. He gets 6 feedings of EnfaPort, which is his special diet formula. The other two feedings are EnfaCare, which is regular premie formula. Hopefully he handles the transition well, and continues to eat well on his own.
Tonight we enjoyed some relaxing family time at the Cornbelters baseball game in Bloomington-Normal. Kristas sorority, Sigma Alpha, had their summer reunion there, and we had a great time visiting with everyone.
We are excited to be getting a much needed rain shower in Leroy right now. Thankfully it waited to start until after we got home from the game.!
Posted by Trever & Krista at 8:22 PM 1 comments
Friday, June 15, 2012
A Plan
Kelsons feedings are continuing to go well. He still gets to try bottles on 4/8 feedings. He generally eats 50-90 % of the amount he needs to take, but seems to be catching on more and more.
Apparently there was some confusion/miscommunication in the surgery department, and Kelson does need to have hernia surgery. He is scheduled to have that on June 27.
The medical team wants to continue to keep a close watch on Kelson for at least two weeks after stopping the octreotide treatments, which will be approximately June 27 as well. If the chylothorax does not return, and Kelson is eating well enough, he can come home after recovering from the surgery. Best case scenario, we will be home by the Fourth of July!
We are excited to have a target date in mind, but are still cautiously optimistic. It feels good knowing this chapter of our lives may soon be over.
Posted by Trever & Krista at 7:16 PM 2 comments
Thursday, June 14, 2012
Eating Champ
This morning we had to break our routine so that Krista, Claire and I could go meet with a potential daycare provider. Claire seemed to enjoy her time at "Miss Connies" house, and is going there for a few hours tomorrow on a trial run.
After a quick stop at the bank, it was off to the hospital. When we arrived, Kelson was not in his crib, he was in a baby swing. He had already rocked to sleep, but apparently enjoyed this new discovery. We missed the 9 AM feeding, but learned that Kelson had drank an entire 60 mL bottle!
Since we didn't get to the hospital until about 10:30, we decided to try feeding him again at noon. However, Kelson was too worn out from his big morning to eat on his own. At 3 PM he was ready to chow down, and drank 50/60 mL. He is making big progress on the bottles.
Today was also the first day without ANY medication. So far, it hasn't seemed to be causing any complications.
The surgeon had also stopped by while we were gone this morning to check on Kelsons hernia. This was a different surgeon than the first one who examined Kelson. This surgeon said Kelson does not need surgery! We were shocked to hear this report, but are also skeptical as to who is right. Hopefully we can get some more answers tomorrow.
Tonight we had more visitors at the house. Claires "God Family",The Voelkers, came to see the new place, and bring Claire her birthday present.
We went to town for dinner, and enjoyed another peaceful evening on the patio. Claire got an inflatable pool, toy sailboats, and a new pair of flip flops. She is going to be set this summer!
Posted by Trever & Krista at 7:58 PM 3 comments
Wednesday, June 13, 2012
Big Boy
Kelson had another good night breathing on his own. He also ate over half his bottles for both night shift feedings. This morning he ate 30/60 mL for me. Kelson continues to be a NICU favorite, and amazes all of the staff.
The surgical NP stopped by again and said they would set up his hernia surgery for Wednesday June 20.
Krista fed at 3 PM and he has his best feeding yet eating 40 mL.
The phrase "going home" has been mentioned multiple times over the past few days. We still don't know what that date will be, but if Kelson continues to be a rockstar, it could be in the near future. I am hesitant to get my hopes up, because we still have many hurdles to cross, but it will be sooo good to have a normal life again.
I just spoke to the night nurse and Kelson had another record eating almost 50 mL. He now weighs 6 lb 6.7 oz. He is getting to be a big boy!
Posted by Trever & Krista at 8:26 PM 4 comments
Tuesday, June 12, 2012
Breathing
I made my daily early morning phone call to the hospital this morning, and received some awesome news. Overnight, they had decided to remove the nasal cannula, since he was not keeping it in very well, and he was doing excellent. Kelson is now breathing 100% on his own without any support.
It was exciting to get to the hospital this morning and see him with more tubes gone. Now the only thing he has is the feeding tube and monitors. I gave him his first feeding of the day. This morning he ate 20 mL. Today they also started weaning the octreotide.
The surgical NP also stopped by and told me she was going to schedule his hernia surgery, since he wad doing so well.
This afternoon Kelson ate 36 mL of food during Kristas feeding, which is a record for him. Tonight the nurses will also work on 2 bottle feedings, for a total of 4 bottle feedings a day.
I am looking forward to getting to bed a bit early tonight so we can do it all over again tomorrow!
Posted by Trever & Krista at 7:33 PM 4 comments
Monday, June 11, 2012
More bottles
Today was another good day. When I got to the hospital, Kelson was wide awake and ready to eat. I started giving him his bottle, and he took off sucking. It is still difficult for him to remember to Suck, Swallow, and Breathe all at the same time, but he is figuring it out. After 30 min, Kelson had drank 31 of the 56 mL! This was excellent, especially considering it was only his second bottle. The rest of the feeding was given through the tube.
Krista got to give him another bottle at 3 PM. This time he only took 11 mL before he wore out. Regardless of how he is getting the food, it appears to be working, because Kelson weighed in at 6 lb 5 oz last night.
For the past two weeks, Kelson has been getting the injection of octreotide to control his chylothorax. Tomorrow they are going to start reducing the amount that he receives. Since Kelson has been on the medication, he has made HUGE strides, however he cannot remain on the medication long term. Hopefully the medicine has given his body time to heal itself, and he will adjust well to being weaned off without any other complications.
Tonight Claire got her favorite food for her birthday dinner...Macaroni and Cheese! We also sang Happy Birthday to her one more time. Hopefully next year things won't be quite so crazy around her birthday.
Posted by Trever & Krista at 7:48 PM 2 comments
Sunday, June 10, 2012
Bottle
Kelson had another good night and day. They lowered the pressure on his nasal cannula, and he was doing great. This meant we were ready for the next big step. Kelson could now take a bottle. At noon we Krista settled in to feed him for the first time. Kelson is up to getting 58 mL (just shy of 2 oz). He started taking the bottle very well, but fell asleep as soon as it started filling his belly. He was able to take 7 mL from the bottle, and the rest went through the feeding tube.
Kelson started dropping his respiratory rate shortly after taking the bottle. He always recovered on his own, but it appeared that sucking on the bottle may have made him extra tired. Tomorrow he will get a bottle for two of the 8 feedings, and they will add a bottle feeding each day. Whatever he does not finish on his own will be given through the tube to make sure he gets enough to eat.
We left to do some grocery shopping, and picked Claire up from Kristas parents. Amy and Ryan Rademaker came to see the house and brought a trailer with some of our stuff on it. We grilled out for the first time here, and enjoyed some burgers, brats and hotdogs on the patio. Claire and I also tried out the new kite she got for her birthday. Tomorrow will bring us back to reality as we try to adjust to another work week. Hopefully the bottle feeding continues to progress. He has to be eating 100% on his own before we can think about getting him home.
Posted by Trever & Krista at 7:50 PM 2 comments
Saturday, June 9, 2012
A Birthday Party
Today was all about Miss Claire. She turns three on Monday, but we celebrated a few days early. Since Claire had spent the night with my mom, we had time to prepare for the party. We wanted to have the party somewhere close to the hospital, so we could also spend some time with Kelson. After considering all of our options, we decided to have the party at the hospital. The NICU social worker was able to book an meeting room for us, and we brought in pizza, cake, drinks and balloons. It all came together great, and Claire had a great time.
Kelson had a great day too. His chest x-ray was still good, so the ventilator is GONE. They even decided to skip the CPAP machine, and put him on a low-flow nasal cannula. This allows Kelson to do all of the breathing on his own, and provides minimal pressure support. They will work on weaning this pressure, and hopefully his first bottle is in the near future. Kelson spent the majority of the day sleeping. He seems
much more content now that he is breathing on his own. Kelson is making giant steps and taking everything in stride.
Tonight we had a visit from Kristas good childhood friend, Jesse Swigart. We are really enjoying living so much closer to friends, and having a great place to entertain.
We didn't spend as much time with Kelson today as we would have liked, but it was important to have a day focused on Claire. The day ended watching her new Strawberry Shortcake movie before going to bed. We are very lucky to have two wonderful kids to spend time with; and soon we will be able to do it under the same roof!
Posted by Trever & Krista at 8:37 PM 1 comments
Friday, June 8, 2012
Bathtime!
We have certainly had a fun-filled day. This morning, Claire and I went to the "cow show". It was great seeing lots of cattle friends at the Central Illinois Angus Association Preview Show in Bloomington. Unfortunately, we couldn't stay long, and left around noon. We stopped and picked Krista up from work, and got to the hospital around 1 PM.
Today was a big first for Kelson. Now that there is less equipment hooked up, and all of his chest tube incisions have healed, he was ready for his first real bath! Until now we could only give sponge baths. They wheeled in the tub while Krista and I got him undressed. I was responsible for holding his head and keeping him still, while Krista washed him up. He wasn't quite sure what to think, but he did pretty well. Aunt Kyla was also here from Ohio to witness the first bath. She was blown away at the changes Kelson had made since she last saw him.
Kelson is also down to a rate of 6 on the ventilator, and is still doing great. Tomorrow will be the big test on what the next step will be.
My parents took Claire and our niece Maddi home for a slumber party, and Kyla, Caisey, and Kempton are spending the night at our house. They will be our first overnight guests.
Tomorrow we are having Claires birthday party. She will be turning three years old on Monday. Hopefully we will have more good news to share tomorrow!
Posted by Trever & Krista at 2:47 PM 1 comments
Thursday, June 7, 2012
More progress
It was another good night and day for Kelson. I got there just in time for the 9 AM feeding, and my Aunt Jeanie and Uncle Steve popped in for a short visit.
Kelson continues to do well breathing, and his lungs have been sounding great, so they are avoiding doing any unnecessary x-rays or blood tests. The doctors are working on aggressively weaning his ventilator. The ventilator is set to take a certain amount of breaths, and let Kelson initiate some of the breaths on his own. They have been reducing the amount the vent takes, and today lowered it from 15/min to 10/min. Kelson didn't even seem to notice the difference. The "plan" is to lower it to 5 tomorrow, and then make an even bigger change on Saturday after an x-ray. Hopefully Kelson follows the "plan"
Kelson also had a routine eye exam today. I had to leave for work, but Krista said he was a pretty good patient, and apparently he passed.
Tomorrow Claire and I are heading to a cattle show in the morning, and to visit Kelson in the afternoon. If everything goes well, we could have some major changes this weekend as things continue to progress!
Posted by Trever & Krista at 6:48 PM 1 comments
Wednesday, June 6, 2012
6 weeks
When I arrived at the NICU this morning, things were kinda crazy, but luckily it was not Kelson creating the excitement. Apparently there had been a set of quads born overnight, so there were 4 new babies helping fill the NICU.
Kelson was wide awake with all the excitement, and ready for breakfast. I held him for his 9 AM feeding. He seems to be tolerating reintroduction of the breast milk, and hopefully it does not irritate the chylothorax.
They lowered the rate on his ventilator today, and are talking about switching Kelson to a CPAP machine. This would give him a constant pressure of oxygen, but he would essentially be breathing on his own.
Kelson is definitely a growing boy. He seems to gain 1-2 oz a day and is up to 5 lb 15 oz. He officially turned 6 weeks old today, and is still 3 weeks away from his original due date.
Claire is back with us tonight, and was excited to go pick blueberries. In just 5 more days she will turn 3. It would be nice to bring Kelson home for a present, but I think we have several weeks before we can make that step.
Posted by Trever & Krista at 8:01 PM 3 comments
Tuesday, June 5, 2012
Just Another Day...
I am tempted to copy and paste yesterday's blog post, because it was a very similar day. However, this morning I took Claire to Gibson City to meet her former babysitter. Claire is having a sleepover at Miss Cierras house tonight, and she was Very excited.
Kelson is continuing to rest and grow. Last night his weight was up to 5 lb 12 oz. He is starting to make a little noise when he cries, but it is still a very faint cry. The big change for the day is that they are going to start re-introducing the breast milk, and see how he tolerates it. He will alternate feeding between the special formula and breast milk.
When I arrived at the hospital, there was a package waiting for us from Grahms Foundation. It was a very nice "NICU survival kit". We are not sure who had it sent to us, but thank you to whomever the mystery person is.
Krista and I both got home around 7:45, and we had our first visitor. Nicki (Reitz) Wiltz came over from Bloomington to help unpack boxes and put things away. It was nice to have company to make the job go by quicker. We almost have all the boxes in the house put away, and then we will have to start tackling the stuff that is in storage.
Tomorrow Kelson will turn 6 weeks old. The past week has been filled with awesome progress. We hope this is a sign of things to come
Posted by Trever & Krista at 8:11 PM 2 comments
Monday, June 4, 2012
Routine
The day finally came for Krista and I to find some "normal". Krista got up early to go to work, while I stayed home with Claire and continued to tackle some projects around home. At 8:30, I took Claire to Kristas parents, and headed in for my shift at the hospital. Kelson was resting when I arrived, as he had already had a big morning. He had more bloodwork done, and another chest x-ray. The Surgical NP also stopped by to check on Kelsons hernia. After visiting with the doctor, I was thrilled to learn that the blood tests were normal, and the x-ray looked great. This means that the medicine is still doing it's job, without any significant side effects. They have continued to reduce ventilator settings, and are considering weaning the special formula, and medication.
At about 1 PM, I left to run some errands, and do some work myself. I work a lot in the champaign area, so it was great to not have much of a drive. I was surprised how easy it was to get back in the swing of things, and even signed up a new client today.
Krista got to the hospital about 3 PM, and was able to spend the rest of the afternoon with Kelson, and gave him another bath. Our goal is for Krista to work mornings while I'm at the hospital, hopefully cross paths to eat lunch together, then for me to work while she spends time with Kelson. This routine is far from ideal, but gives us both opportunity to be with Kelson, and get some work done.
When we all got home tonight, we went exploring around the new house. We were able to enjoy the first fresh blueberries, and the raspberries and blackberries will be ripe soon. The peach tree is also loaded with little peaches. It is so exciting to have so many fresh fruit bushes, but I have a feeling Claire will eat them faster than they can grow. We continue to unpack little by little, but unfortunately, we start running low on energy about 9 PM.
Today felt very productive, but I am definitely ready to crawl into bed tonight. Hopefully Kelson continues to stay on track...at this point we certainly dont need any more curveballs!
Posted by Trever & Krista at 7:43 PM 2 comments
Sunday, June 3, 2012
Sunday
It was a great Sunday morning. I woke up early without the alarm clock, and got ready to start the day. Claire spent the entire night in her own bed in her new room. Kelsons report from the night nurse was positive, as he continues to thrive.
A big thank you goes out to Roger and Carol Read, who came to paint our bedroom in the new house. We stayed long enough to get them started, and then headed to the hospital. Kelson had been very tired today, and enjoyed some nap time in Mommy and Daddy's arms. We had a visit from Melissa and Charlie Brown, along with their 9 month old twins. Claire also got to come back and spend some time with her little brother.
We had a great report from the doctor today. Everyone continues to be amazed at Kelsons progress. They have been weaning the settings on the ventilator, and he appears to be handling it just fine. Tonight Kelsons nurse put up a mobile, and a music box, so he has some entertainment. He seems to really enjoy things to look at.
We picked up some sandwiches from the cafeteria tonight and brought them home to enjoy with Claire on the back patio. The rest of the night was spent unpacking and putting away clothes. It is nice being able to enjoy our new home, along with the amazing weather.
Posted by Trever & Krista at 7:18 PM 2 comments