Monday, April 29, 2013

Take Home Tests

Day 8

Our turn for the better yesterday continued today. Landon was stable again, showing signs of improved sucking skills (hurray!) and his case manager is confident that his management protocol will control his seizures for an extended time. In fact, the neonatologists in the NICU have suggested that we bring him home Wednesday afternoon instead of Thursday! Our nurses emphasized how complimentary this suggestion is of Karen and myself. Even though Landon's condition requires close supervision and the ability to intervene in an emergency, they are confident that we can handle whatever may arise. We are definitely excited to finally have a more normal life but there are a few hurdles yet to cross before we can put him in his own crib.

A representative from a medical supply company came today and trained us with the at home apnea monitor we will be leaving the hospital with. The device is relatively simple. A soft cotton band wraps around Landon's chest with two small sensors on the inside. The band is connected by two wires to the monitor which will keep track of his respiratory rate and heart rate. A loud alarm will go off if Landon's heart rate goes over 230, under 80, or if his breathing stops for 20 seconds. While we don't anticipate these scenarios coming to pass, it is reassuring to know that we will be warned before anything more serious happens.

In case of the worst, we are being trained in infant CPR on Wednesday morning. Obviously this is a skill we hope we will never have to use but I'm sure both of us will be more comfortable having the knowledge. To be honest, the nurses' insistence on practicing for an emergency can be frightening sometimes. I know that practicing is the best way to develop muscle memory and keep calm in a critical situation but the fact that there is a very real risk that I will use these skills is stressful to know in the back of my mind.

 Goat is going through his carseat tests overnight tonight. In order for him to go home in a carseat, the NICU requires him to sit in his seat for at least 90 minutes and show the ability to maintain his airway during that time. If he is unable to pass this test, we will have to take him home in a carbed and will be much more limited in our ability to take him out of the house once he is back to Manhattan.   He seems to do best while he is sitting up so we are optimistic that he will pass his testing but I suppose we will just have to wait until tomorrow morning to find out. That would be a nice feather to add to Landon's cap and would be another step toward having a little more conventional infancy.

Today we found out that Landon qualifies for KanCare, a program related to medicaid, after we max out the coverages of both Karen and my own insurance policies. It is an incredible relief to know that some of his expenses will be covered even after we reach his 1 million lifetime limit. I know that finances should be of no concern but it is easy to let those kinds of worries creep into your mind. The strength of our relationship and our faith has buoyed our spirits against these difficult eventualities and we have confidence that when the time comes to handle our finances, we will manage.

In the interest of desperately needed study time, I've kept tonight's blog a bit brief. I've been told that the messages here have been uplifting to some and at least informative otherwise and I'm thankful for those sentiments. My small spark of inspiration came today while changing Landon's (very full) diaper. I realized I was standing there wiping a dirty butt and weighing a stinky diaper with the biggest grin on my face, just loving every second of it. Everything we get to do in this life is temporary and someday I won't get the chance to change Little Goat's drawers anymore. I think enjoying all the dirty, stinky moments life throws at us is a key part of living a contented life.

God bless and stay positive!

Peace and Quiet

Day 7

After the stressful events of yesterday, I had a foreboding feeling on our way to Topeka today. I should have known better than to doubt my little fighter and his doctors. We arrived to find Landon hungry, grumpy, and seizure free. Having returned to his normal anti-convulsant dosing schedule, Landon's level of phenobarb is more stable and better controls his seizure activity. Even when he was extremely stimulated during a full workup (diaper change, weigh in, blood pressure check, new EKG leads, temp, and clothes change), he remained seizure free.

Landon's report for the day was one of quiet stability. No seizures, no oxygen desaturations, no temp drops. An uneventful day seems like a huge step in the right direction after the fiasco that was yesterday. No news was great news. We even celebrated the tiniest of victories, moving from newborn to size 1 diapers! Apparently he has inherited his father's appetite and seems to be constantly hungry. We changed is feeding from every 4 hours to every 3 and I fully expect him to still be unsatisfied.

As you can see from the video, Landon is making tons of progress on learning to suck (I apologize for my helium high voice, I haven't perfected baby talk yet). He is actively looking for things to suck on and he frequently gets in a rhythm of several pulls in a row. He is still unable to effectively swallow and breathe simultaneously but we are hopeful that those skills will develop with time. For those who are concerned, the sounds he is making are not straining to breathe, it is actually the fluttering of his vocal cords. Most of us have muscle tone that helps hold our vocal cords in place when we are breathing and otherwise not trying to make sound. His body can control his cords when trying (as when you hear him cry) but fails to hold them in place when he doesn't want to use them. This is something that many babies develop over time as they get older and stronger. To all my vet school friends, yes it sounds like tracheomalacia but I was assured that it was not (I asked the same question).

These moments of alertness really show the great progress he is making. He is obviously not a baby that is struggling to survive but one that is doing his best to thrive. Karen and I have made it a goal to foster his efforts in every way we can, even if that means a little less sleep at night and a little more education on supporting a baby with special needs. We are being trained to use an apnea monitor in the morning and to evaluate mobility and strength by an occupational therapist later this week.

We are still awaiting the results of genetic tests being run this week. We should know much more about Landon's condition on Thursday or Friday when these test results come back. As of right now, Karen and I are optimistic about the results. Little Goat has already exceeded the expectations of many and shows an eagerness to do more every day. The biggest risks to Landon's health right now are seizures and secondary infections. As we learned yesterday, a strong seizure can paralyze Landon's diaphragm and stop his breathing. With the adjustments being made to his anti-convulsant regimen, we trust that we can establish a long term solution to that problem. The risk of secondary infection is very real for Landon if we can't get him to suckle to feed. The insertion of a naso-gastric tube can easily introduce dangerous bacteria to his system and a G-button poses similar risks (as well as those associated with a major surgery, particularly on a respiratory compromised baby).

Sometimes the battle against Landon's condition seems like an endless war, something we can never win but must always fight against. It is easy to see the disease as an opposing soldier that is attacking Landon, something that is taking him away from us. When I think about it though, this mindset is hurtful to Little Goat. This disease is most likely in his very DNA, what makes him who he is. If we wished he was different, we wouldn't be able to cherish the person that he is with our whole hearts. That doesn't mean I'm glad he has this condition, but rather that I embrace everything about Landon, ailment and all. He is my unique angel and he is teaching me lessons every day. There is no beating this disease, but luckily we don't have to win any battle to win this war. We are already victorious because we don't see Landon as broken or something less than what he could have been. We seem him as a champion of his life, excelling in every way he can and inspiring his mom and dad.

"Whenever you are confronted by an opponent, conquer him with love." - Mahatma Gandhi

Saturday, April 27, 2013

Handling the Rough Days

Day 6

Today was a tough one in the life of Landon. During feeding, shortly after 6 o'clock this morning, Landon suffered a small seizure. We reported the incident to his nurse and he was reconnected to the ECG and apnea monitors he had been on this week. He was very alert, active, and upset for most of the morning and during his noon diaper change he suffered another seizure. This noon seizure was his most serious so far and put his health in significant danger. Landon failed to breathe effectively for almost two minutes during this particularly strong episode. We weren't in the room but his nurses responded to his drop in blood oxygen levels quickly and were able to stabilize him with some supplemental oxygen.

He had one other small seizure later in the day but nothing else that interfered with his breathing. We have attributed this increased frequency of episodes to a small change made to his phenobarbital dosing regimen. To ease his transition to home, Landon's dosing was reduced from 4 mg of phenobarb twice daily to 8 mg of phenobarb once daily. The problem with this dosing regimen is that the level of drug in his system fluctuates too greatly, with a higher high right after administration and a lower low just before the next dose. The result is that he is more sedated at times and more awake, and prone to seizures, at others. While this change may not be the sole reason for his increased seizure activity, I am confident it is contributory and have asked the staff to return his dosing to two smaller doses. There was agreement that this could lead to an improvement and the dosing schedule was changed.

At 2 this afternoon, Landon had his second hearing test. Unfortunately, he failed in both ears on this attempt, having failed in only the left on his first try. The technician was able to get responses in both ears but his hearing may be reduced, although we do not know to what degree. He will have an appointment with a specialist after his discharge from the NICU. However, due to the recent seizure activity and spells of apnea, Landon's discharge has been moved back to Thursday at the earliest. Hospital policy is to wait 5-7 days after any apnea spell that causes his oxygen saturation level (the amount of oxygen in his blood compared to the maximum amount of oxygen his blood is able carry) to drop under 80% before a baby can go home. His level dropped to just under 50% during his strong seizure today.

Another small change made today is that Landon will require an apnea monitor when he's at home. The monitor will alert us if he has has periods of shallow or complete stoppage of breathing. The idea is that we will have time to intervene and stimulate him to breathe in the event of a severe episode like the one he had today. I'm unsure of whether we will have an oxygen assist device at home to help him in a truly dire scenario or not. The events of today and concern for the future are understandably worrisome. I am confident in our ability to provide care and recognize a serious situation but it is hard to be comfortable knowing that your child could be in very real danger and the only thing standing between him and the worst is your ability to intervene. Although I'm anxious to have him home, I am glad he is staying in the NICU a bit longer until he is more stable. I refuse to put his health at risk for our own convenience and finances.

Our silver lining on this dark cloud of a day was that some of our closest friends and family were able to hold Little Goat for the first time. My and Karen's parents (Kurk, Kris and James, Denise respectively) held him today for the first time since his admission to the NICU, and my sister and brother-in-law (Mikaela and Brandon) and Karen's younger sister (Jamee) held him for the first time ever! Luca and Jess, two of our closest friends, visited and held Landon for the first time as well. I would like to give a special thank you to Luca and Jess for being a pillar of strength when I needed one on the night of Landon's emergency transfer. They came to the hospital, knowing nothing of Landon's condition, and stood strong to support me when I needed it desperately. They have been a blessing in our lives for so many reasons but that particular moment is a testament to their incredible character.

I will resist the urge to thank every person I want to by name as this is no academy award speech. However, I will say that our family has proven itself second to none at every challenge and our friends, near and far, have blown away my former understanding of a friend's capacity to assist in healing. To my classmates and the rest of KSU CVM, you have gone above and beyond what can be expected from any reasonable group of colleagues and have proven yourselves much more than that. You are an unreasonable group of incredible kindness, outrageous generosity, and abundant enthusiasm. We continue to be thankful for the hard work and skill of our NICU nurses and doctors as they tirelessly pursue answers. Finally, I would like to thank the members of my home church and all the churches and prayer groups lifting us up for their fervent prayer and for representing the spirit of Christ in your actions and words.

Most of you might not know that I have quite a fondness for fantasy and adventure stories. One of my favorites is the Lord of the Rings trilogy. Today, while considering the reasons why Landon might have fallen into the care of Karen and I, I was reminded of a small excerpt from The Fellowship of the Ring.

“I wish it need not have happened in my time," said Frodo.
"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us."

May we all rise to the occasion and meet the challenges in our lives head on and with fortitude.

NG tube training

Day 5

Every new parent has a few skills to learn before they are able to bring their child home. Everyone learns how to change diapers, put on onesies, warm up milk, sanitize bottles, and on and on. With the special challenges Landon faces, Karen and I needed to master some other skills before we could properly care for him at home. Today we were instructed on the proper technique to place an NG tube for feeding him. Although I’ve performed this procedure several times on puppies and kittens, placing a tube on your son is a very different experience. Karen switched out his tube before his 6 o’clock feeding and I was very impressed with her calm and skill. She could have been quite a nurse if she’d wanted.

The NG tube change capped a very stressful day for Little Goat. An occupational therapist visited him this afternoon to evaluate his muscle tone and joint flexibility. Although he is weak overall, he passed his test and she was very pleased with his progress. One of her discoveries was that Landon actually has feeling in his right leg! When the first neurologist performed his exam one week ago, he could not get Landon to respond to pinches or pokes on his right leg. We were concerned that this may mean he had no sensation in that leg but, in the grand scheme of things, that was a minor worry. Obviously we were very surprised when he curled his little toes around her finger today! His feeling and strength in that leg are limited but we are hopeful that there will be more progress.

Soon after the OT tested Landon, we had a few visitors. Our good friends Brit, Steph, Tayley, and Whitney dropped by to see our little fighter and were the first non-family members to touch and hold him! Landon was grumpy from having been worked over for his exam but it was wonderful to see him so awake, even if it was so he could scream at us. The anti-convulsant medicine he has been on has been sedating him so that we rarely hear more than a whimper. Today we were blessed with wide-eyed attention and more than a few outraged cries. I’m sure I will eventually grow tired of his crying but I am enjoying the chance to see some of his personality peek out right now.

Sadly, due to overstimulation from his therapy and uncomfortable NG tube swap, Landon suffered a major seizure today. For almost 30 seconds, Landon’s eyes rolled back, his fists clenched and unclenched, arms and legs jerked, and breathing became irregular. Episodes like this are terrifying, even in the relative safety of his hospital room with monitors attached and nurses at the arm. You feel absolutely helpless and the unfortunate truth is that we are. Our only recourse is to patiently wait for his attack to subside and then remove as much stimuli as possible from the room. Quiet sounds, dimmed lights, and minimal touching. The urge to rub his back or hold his hand is tremendous but we’ve been advised to restrain ourselves. When his episode finally ended Landon resumed crying until I stood up with him and very gently rocked back and forth. He has been sleeping well since then, as would I after such a traumatic day.

The best news of the day is that Landon sucked on my little finger very well over several minutes this afternoon. While he hasn’t shown the ability to “suck, swallow, and breathe”, his increased coordination is encouraging. Eventually, with continued improvement, we might attempt to bottle feed him. Talk about a milestone we never expected to reach after the initial diagnosis! One of our biggest concerns has been limiting the number of major surgeries Landon has to go through but having a gastro feeding tube put in was one we thought was inevitable. I have never wanted to be more wrong and Landon seems determined to surprise me in some way every day.

Karen and I are staying in the hospital tonight so that we can care for Landon by ourselves (with help right around the corner should we need it) in preparation of going home. I’m sure we are supposed to comfortable sleeping at some point but our hearts are in our throats a bit with the responsibility of caring for such a fragile little man on our shoulders. He really is beautiful to watch sleep though. Being so close to him at night feels pretty wonderful; like no matter the challenge, everything is going to turn out OK because we have the love we need to get through it. For tonight though, we’ll be quite satisfied with Twinkle Twinkle Little Star on the speaker and a little family bedtime prayer.

Now I lay me down to sleep
I pray the Lord my soul to keep
And in the morning when I rise
I’ll see God’s world with my bright eyes
God bless Karen, Landon, and Me

Friday, April 26, 2013

We Have a Move Out Date

Day 4

After the most grueling week of our lives, Karen and I took time this morning to sleep in, eat lunch with my mother, and visited a local flower market to shop. Most importantly, we embraced normalcy for a bit and stepped away from the constant worry and fear that sits in your chest every moment we're in the hospital. We didn't try to forget about Landon (we picked out a flowering ornamental pear tree and planted it in the backyard for him), but we tried to have a day more like what "normal" moms and dads know. While my body certainly appreciated the break, I was surprised by the growing amount of guilt I felt as the day went on. I can't speak for Karen but I definitely felt negligent for taking time for myself when my son was an hour away in intensive care. I suppose that's a normal for any parent with a sick child but it makes physical and emotion recuperation difficult.

We got back to the hospital at 6 o'clock tonight and the sight of Landon in his monitors was both a relief and huge stressor. Trying to understand Landon's condition and our circumstances has been a lesson in mixed emotions. I guess part of the challenge is living in the moment but still being unsatisfied, hoping and praying for improvement. I still don't understand how those mindsets can coexist but it's something I'm working on. Success would be a small step in the right direction of the overall goal: letting this experience change us for the better.

Landon's resilience and progress has made this process manageable for all of us. Today was another example of how even tiny achievements can really raise our spirits and make the fight worth fighting. An eye exam this morning revealed that Landon has vision and the ability to track moving objects in both eyes. We were concerned that he may have been deficient in his right eye but our fears were unfounded. Landon will be able to see his mom and dad! It is a huge relief to know that your son will be able to know your face and voice (he has full hearing in his right ear and at least partial hearing in his left). As long as he can hear, see, and feel how much I love him, I am content for now.

Landon also had his last big blood draws today and had his PICC line removed! We should know the results of his genetic tests they are running on this blood late next week or early the week after. The only tubes and wire still connects to Little Goat are his feeding tube, EKG, and SP02 foot probe (measures blood oxygen levels).

Finally, the biggest news we've gotten since Landon's admission to the NICU. The doctors have tentatively given us "early next week" as a date for Landon to come home! They've decided that there is very little they can do at the hospital that Karen and I can't do at home and want to give us the opportunity to spend as much time as possible with him. They will be begin training us to change his feeding tube, read his monitors, and perform emergency care tomorrow. The day we have been praying for all week as finally arrived but, again, there are definitely mixed emotions.

Karen and I are scared. I know that every first time parent is scared to have their child at home alone but for us to be faced with the added challenges of Landon's condition is extremely daunting. He is coming to our humble home from a facility where he is given 24 hour care by highly trained, experienced staff with state-of-the-art equipment. How can we possibly provide him with that level of protection and management? The circumstances of his discharge have caused me concern as well. If they can do nothing else to improve his condition, how can I? We will be working closely with neurologists, neonatologist, pediatricians, and geneticists from around the country on an appointment basis but there is probably very little that any of us can do.

No matter how scared I am, I am reassured by one thing. It isn't me or Karen or any doctor who is in control of Landon's progress. Landon himself will determine the quality of his own life by how much he is able to learn and how hard he is willing to fight. He has already shown me that he is a warrior and I could not ask for a tougher little boy. He will be surrounded by love and support every step of his journey and we will lift him up in prayer daily. If he has shown me anything already it is that he will always exceed my expectations. We are so blessed to have him in our lives.

Thursday, April 25, 2013

Into a crib we go!

Day 3

What an incredible day for Little Goat. As parents focusing on small victories, huge milestones like the one we reached today make you want to stand up and dance. Having maintained his temperature for 72 hours, off all antibiotics and antivirals, and no longer needing supplemental feeding with 10% dextrose, Landon was moved to out of his isolation incubator and into a crib today! Karen and I arrived this morning to find him happily snoozing in the open air with only monitors, PICC line, and feeding tube attached. I understand that his condition has made modest improvements but visually, and psychologically for mom and dad, he took a huge leap today.

A few of the small battles we won overnight to reach this triumph: Landon's skin swab for viruses came back negative and he was subsequently taken off of acyclovir. At 6 o-clock this morning he reached his maximum feeding dose (60 ml of milk ever 3 hours) for his age, dismissing the need for a D10 IV. This was expected but still a wonderful step for Karen and I as it was his last 24-hour IV line and allows us to hold him more or less unimpeded. With the risk of infection removed, Landon's nurses are now able to be in Landon's room and touch him without gowns and gloves. This is probably more of a psychological boost for those of us watching but we like to think he is more comfortable with the contact of human skin than neoprene. The greatest benefit to having infection cleared off the table as an etiology is that friends and family can hold him now! What a blessing to be so close to such a precious gift.

A friend pointed out to me that I have failed to emphasize how rare Landon's condition really is. Subdural hygromas are an uncommon but well documented medical condition. However, the average age of those diagnosed is over 70. You see, subdural hygromas are normally caused when an elderly person with declining circulation suffers a traumatic brain injury from a fall or other accident. Quite rarely cases are seen in children after suffering from severe meningitis or other brain infections. To our knowledge, Landon may be only the 4th person to suffer from a developmental subdural hygroma. Even that description is inaccurate as a hygroma describes a build-up of cerebrospinal fluid and, as we learned today, Landon's brain is actually surrounded by something else entirely.

A neonatologist met with Karen and I today to discuss the pathogenesis of the space occupying lesion that inhibited the growth of Landon's brain. Initially thought to be blood, further examination of radiographic films has led them to believe that it is actually proteinaceous fluid around his brain. To simplify, blood is made of three main components: red cells, white cells, and the rest. The rest is called plasma which contains 90% water and 10% solids, mainly proteins and chemicals released during metabolism. This plasma can leak out of blood vessels in some situations. In this case, Landon's brain began developing too far from the vessels in the trunk of his body and so when the vessels in the brain met the vessels from the body, they were stretched and narrowed. Think of it as a Chinese finger-trap: as the two ends get farther apart, the connection in the middle gets narrower. This happened when Landon's was just starting to develop and those stretched vessels allowed plasma, and maybe a few red and white cells, to leak into the area around his brain, eventually filling the space and preventing his brain from growing further.

So now that we know what happened, what does that mean for Landon? Unfortunately, we still have many questions. First, why did Landon's brain begin to develop too far away from his body? The doctor's are as stumped as we are in this regard. Our best guess right now is that a genetic mutation caused the problem. To find out more, Landon will have blood drawn from his PICC tomorrow for a micro-array and other genetic panels. This should tell us if he has any genetic changes that caused his disease. Karen and I will likely have blood and tissue samples taken as well to determine if we may carry recessive genes that could have been passed down to our son. In all likelihood, this is an extremely rare, and novel, gene mutation unrelated to his parents. This means Landon may be the first and/or only person to have this gene mutation identified. His condition is rare indeed.

We are well aware of our good fortune to live in the age we do. Neurologists and neonatologists from across the country have been provided with Landon's medical records and are providing insight into possible causes and ways to improve his life from here on out. What has the collective knowledge of the brightest minds in the country told us? Something of which we were already well aware. Landon is unique and we need to cherish his time on this earth and the lessons he can teach us.

Upon finding out that Landon was a 'mutant', I joked to Karen that we should find Professor Xavier's number, we have a new member for the X-Men! In reality, I would love for Landon's mutation to have given him a superpower, a gift that would make him a world hero and role model. But maybe instead of the ability to fly or x-ray vision, Landon was given the power to teach us things we can never learn in a classroom: compassion, love, patience, and hope. To cherish the moments we have and the victories we win. To traverse our difficult times with grace and faith. Landon may not be able to jump over buildings. Realistically, he may never have the chance to learn to crawl, and yet, in my eyes, he is more of a hero to me than any comic book protagonist. If we could all embrace this lesson of love and benevolence, what need do we have of crime fighter? Landon's lesson is that we can all be heroes to someone else each day because we usually don't need saving from an evil mad scientist. Usually we need a hug, a kind word, a held door, or friend to reminisce with.

God Bless all of you for being the strong back I need to help carry myself and my family through this difficult time.

Tuesday, April 23, 2013

First 'Birthday' (1 Week!)

Day 2

In my excitement to post last night I failed to mention a few exciting milestones we reached last night! Karen and I were able to give Landon a bath for the first time and we were able to fold him in some of his own blankets. It is so fulfilling to get to do "dad" things with him, even if it is something as small as washing his hair and scrubbing his butt. We wrapped him in the softest, warmest blanket we could find afterwards, put on some lullaby music, and Karen rocked him to sleep. Everything felt so normal and wonderful. Moments like that make it easy to forget the beeping monitors and electric feeder pushing milk through his feeding tube. Alas, 7 o'clock arrived and we had to return him to the incubator for the nurse shift change.

Today, we celebrate Landon's first week of life. I have no idea where the time went. This first 'birthday' was celebrated by 2 full hours of holding our baby boy in his favorite elephant blanket. This is the longest we've had the chance to hold him so far and every second is cherished. The doctors are continuing to increase his milk intake at each feeding by 3 ml until he reaches 60 ml every 3 hours as long as he digests over 2/3 of his food. His 9 o'clock feeding was 51 ml, so he should transition to full feedings overnight tonight! This is great news and a real milestone. When he is on full feedings, Landon will have the 10% dextrose IV (which supplements his feed intake) removed from the PICC (peripherally inserted central catheter) in his left armpit. One less tube to get in mom and dad's way while we hold him!

Landon was visited by the infectious disease specialist today to assess whether he needed his acyclovir still. The blood samples taken on Thursday came back clean (hurray!) but she wanted to wait for a clean skin swab before taking him off the antiviral. We should find out the results of that test tomorrow. A speech therapist also assessed Landon's ability to suck and swallow today. Unfortunately, she could not elicit a suck response from him and when she pipetted milk into his mouth he choked instead of swallowed. We are so pleased with his progress so far but our greatest wish is to have him learn to suck. That would be a huge step toward going home without having to surgically place a feeding tube in his side (frequently called a G-Button). We would hate for him to have to undergo any surgeries but if that's what we have to do for him to be happy and healthy and HOME, we will do it.

Karen and I have been struggling to leave the hospital more and more each night. Tonight was particularly difficult. Our moments holding him are precious and the greatest minutes of our lives but they throw into sharp relief the emptiness of your arms without him. He fills a place in our hearts that is perfectly cut for him and causes physical pain to be away from him. We needed a few shared tears on the way home to recover tonight and I'm sure each ensuing night will be increasingly hard. I pray that we can find solace in his improvement and for patience in waiting for the day when we can bring him home for good.

I would also like to take this time to thank the talented doctors and nurses caring for my Little Goat. Everyone has been extremely compassionate and invested in his progress and the level of intelligence on display shows a real dedication to their field. It is evident that years of hard work have gone into the well-oiled machine that keeps Landon happy, healthy, and comfortable. They are all so generous with their time and have shown only kindness to our family, friends, Karen and myself.

We anticipate an exciting and blessed day tomorrow with our little man!

P.S. Karen and I are very uncomfortable asking for money from others as we understand that everyone faces hardships in life. However, we are realistic about our ability to pay for Landon's mounting hospital expenses and some of my unbelievable associates have set up a fund to assist us. If you feel inclined, we would be extremely grateful for any donation. Do not feel obligated in any way as your thoughts and prayers are more than we could have asked for. The fund can be found here:

Landon Shrader Family Fund

Thank you again for your generosity in whatever form it takes.

Monday, April 22, 2013

An Adventure with Landon

Day 1

Six days ago, April 16, 2013, Landon James Shrader took his first breath and changed my life forever. Everything else in the world fades to insignificance with the birth of your first child. He changed my definition of love, joy, and exhilaration just by existing. Born at 7:07 pm and weighing 7 pounds and 1 ounce, he was the vision of perfection. Already handsome (obviously from his mother's side), my world has revolved around him from minute 1. I had often imagined all the exciting times we would have together but unfortunately our big adventure started far too soon.

Early in the afternoon of April 17, Landon had his first seizure. By 4 o'clock he had suffered 4 and Mercy Regional was unprepared to deal with such an emergency. Due to severe storms, a transfer by helicopter was impossible and we waited 2 agonizing hours for an ambulance to arrive from Topeka. By 9 o'clock we were in the waiting room of the Stormont-Vail Neonatal Intensive Care Unit (NICU), anxiously awaiting word on his condition. An hour later we were finally allowed to see him and were informed that his seizures were under control through chemical intervention with Phenobarbital. Further tests would wait until morning. Karen and I slept in fitful bursts that night.

Thursday morning had many tests in store for Landon. Before noon he had undergone an MRI, blood draws, skin scrapings, lumbar punctures (5 times), EEGs, aEEGs, and a CT scan. He was placed on ampicillin, gentimicin, acyclovir, furosemide, D10, and was given a naso-gastric tube to allow for feeding. At approximately 4 p.m., only two days after the happiest moment of our lives, we were given heavy news. Landon's brain is only 1/3 the size it should be, its growth restricted by a 6 mm thick layer of fluid around his brain. The damage was permanent but the severity of the lesion was still unknown. It wasn't until 10 pm, when a neonatal neurologist was brought in, did we discover that he would probably have trouble breathing, eating, and regulating his own temperature. Further tests were needed. No sleep again that night. Karen and I had barely eaten in 48 hours as well.

Following a CT scan, Friday night brought the lowest moment of Karen and my lives. Consultation with a neonatologist revealed that Landon is unlikely to reach his first birthday due to complication that often coincide with babies that struggle to eat and maintain their own temperature. Despair can hardly describe our emotions. Our 3 day old, perfect, beautiful, intensively loved son was given a deadline that neither of us thought we could cope with. It felt like the world was crashing down around us.

And yet, for some reason, we kept breathing. Inevitably, another second ticked off the clock. This was real and we were going to have to deal with it. Landon's condition scared and intimidated us (it still does), but if anything it only made us desperate to love him more. We need to fit an entire lifetime of love into such an an abbreviated dash of life and that can only be done by special parents sacrificing for their precious gift. And so we made a conscious decision to 1.) Thank God for this gift of life and beauty that we'd been given and 2.) To cherish every single moment we had with our "Little Goat." With the love, support, and compassion of our friends, families, classmates, coworkers, and community we made it through that night and began our adventure with Landon.

Our goal is to find and celebrate one victory each and every day of Landon's life. Saturday, Landon was able to make it through the day with only 1 seizure and sucked on his pacifier twice. Sunday was a huge day with lots of improvement! He began centering his arms, regulated his own temperature for over 20 hours, lowered his dose of Phenobarbital, and was able to wear pajamas for the first time. Monday showed great improvement as well. With a lower level of phenobarb in his system, Landon was breathing smoothly, regulating his own temperature, and finally off his antibiotics. The nurses took one of his IV lines out and Landon was able to suck on the back of his hand.

When you have a blessing like Landon in your life, smiles and happiness come easily. We are determined to stay positive and make his time with us as exciting and filled with love as we can. With our amazing support system (and a bit of stubbornness), we are confident we can take a difficult situation and turn our time with Landon into a celebration of his life. We're excited to have you join us on our adventure with Landon.