A 100 Days Confession

Today Landon's intern mentioned that he has hit 100 days in the NICU and said he deserves a party. The first thing I thought was 'what is there to celebrate, it has been 100 days and there is no end in sight.' She is right though, he deserves credit for every minute he has been alive. We have 100 days with him that my doctors said would never happen when my water broke. Regardless of what happens from here on, we are so lucky for these days.

I have to confess, Ryan and I try so hard to put the image that we are handling this effortlessly, but this is hard. When I was on bedrest, I would be sure that he was going to come nearly every night. I begged God to allow him to stay in me just one more day and he did. I am not perfect. I want to have faith and patience and strength in God's plan, but sometimes this seems like an impossible task. Last week was particularly impossible with the obstacles Landon faced.

He continued to drop his heart rate and the oxygen level in his blood to the point of needing resuscitation more than 6 times a day. Finally, it got so bad he had to be put on the ventilator. On top of that, they stopped feeding him just in case his heartrate problems were due to an infection in his belly. And then came the hardest news of all, they did a test to see how Landon's heart was working. It showed signs of a condition called pulmonary hypertension, which essentially is the first stage of heart failure. This condition is not uncommon with babies who have bad lungs. Their lungs are working so hard that it causes the heart to work too hard as well. Thankfully, Landon just shows the beginnings of this condition and it is still very treatable. His doctors are still figuring out the best treatment plan, and we should have a better idea of what they will do over the next few weeks.

After the discovery of his heart problems, some bacteria cultures showed that Landon had an infection in his throat. This more than likely caused the sudden onset of low heartrate and low oxygen saturation. He started to feel and act much better within a day of getting antibiotics for the infection. Today, he was feeling so much better that they were able to take out his vent tube. This was good because he HATED the vent much more this go around than any other time because he is older now. Our hope is that the infection made his heart show signs of pulmonary hypertension and once he is done with antibiotics in a few weeks, his heart will look better.

Just to make things even more interesting, his right eye caught up with his left eye and was on the threshold of needing surgery. He received the injection in his right eye as an alternative to surgery and so far it seems to be working. They will have to keep a close eye on both of his eyes, but hopefully his eyes continue to grow as they should. We do know he can see though because his new thing is to stare at the pooh bear stuffed animal we got him. We think he may like him because he is yellow and Landon is pretty yellow due his poor liver function. It is his brother from another mother!

I have received many questions about when Landon can go home. Trust me when I say that question is always in the back of my mind. The short answer is that it won't be any time soon. Although he is big enough to have his gut surgery, he is just not stable enough. He has to be off of the vent for an extended period time. They would also prefer him to be at full feeds of breast milk for a period of time to help his liver to start working better. These things will happen on his (Landon's) and His (God's) time. I wish I had a crystal ball to see when this will be. Instead I must pray for faith and strength and patience.

A Real Boy

Last week was a bittersweet week for us. Landon turned 3 months old and reached his due date. In a perfect world, he would be home by now. We say he is now a 'real boy' a la Pinocchio. We did have some good news last week. On Monday, the eye doctor came and let us know that the drug they injected on Thursday had worked and he no longer was at the threshold to need eye surgery in his left eye. His right eye was still ok. We were thrilled. This doesn't mean that he will never need eye surgery, but it at least puts it off for a little while longer. He will get weekly eye exams to keep an eye on it. (Haha pun intended).

On the feeding front, they continue to increase the amount of breast milk he gets through his feeding tube while decreasing the nutrient fluid called TPN that he has been dependent on since birth. Adding to this fun (warning the following sentence involves poop), they have started taking out the output of poop from his ostomy bag and 'refeeding' it into his lower intestine. This basically causes him to poop twice, once in the bag and once the normal way. They do this to get his lower intestine to start working before they try to reattach it. This also allows Landon to absorb more calories since a lot of the body's nutrient absorption happens in the lower intestine. If he continues to tolerate his feedings, he will eventually be able to try to bottle feed. Given the way he LOVES sucking on his binky, we hope that he will have little problem bottle feeding.

We were also happy to find out that our July doctor team is actually a flashback from April with Dr. D as our attending and Dr. Karen as our fellow! Even more fun is that we randomly know our two interns, Dr. Courtney and Dr. Megan from outside of the hospital. I went to grade school with Dr. Courtney and her parents are friends from church with my parents! Dr. Megan is the cousin of the best friend of one of my good friends. God is just sending us angels from everywhere! We even got a special guest visit from Dr. Nancy Pretty Eyes, who was very impressed with Landon's growth.

Speaking of angels, I must interrupt our regularly scheduled program to tell you about the adventures of Ryan and Landon's main primary nurse Kimmy, aka The Other Mother. Since I have gone back to work in the afternoons, Ryan is alone with Landon on Thursday and Friday afternoons. Apparently, this is not very stimulating for him as he has decided to wage a prank war against our wonderful nurse Kimmy! It all started when Kimmy was appointed the official 't-shirt giver outer' of a team she participated in at work. This was a big deal as in past years people didn't receive their t-shirts and anarchy ensued. In order to avoid this, Kimmy had a system of giving out the t-shirts and checking off a person's name once they got theirs. Ryan decided it would be funny to hide the t-shirts throughout the NICU room. I came back from work to find Kimmy frantically looking for the t-shirts and Ryan with a mischievous look on his face. I got Ryan to fess up and Kimmy was already formulating how to get him back.

Unfortunately, Ryan was too fast for her, probably because she is too busy taking care of our baby to wage prank wars! He decided to put a piece of tape on the bottom of her computer mouse so when she went to chart what Landon had been doing that day, her mouse didn't work. Ryan got Landon's neighbor's parents involved in the fun and I once again walked in from work to find the 3 of them snickering as Kimmy contemplated calling engineering to fix her computer. The final blow was when Ryan used a prank phone call app on his phone to call Kimmy and tell her that her credit card had been used to purchase exotic pets in Guatemala. He admitted to doing that one about the time Kimmy started looking for a garbage to puke in out of anxiety of having to work through a credit card fraud nightmare. I was pretty mad at him for that little stunt. However, after getting over the shock, Kimmy wasn't too mad at him and is already thinking of payback...

Alright back to Landon. The last three days have been more of a challenge then usual. He has started a fun new trick of holding his breath until his heartrate drops to the 40s and then drops the oxygen level in his blood to almost nonexistent. The result is a rush of nurses working to make him start breathing again and sometimes even having to resusitate him with an oxygen bag giving him manual breathes like with CPR. This event happens about 4-5 times a day and causes our hearts to race each time. It is usually followed by Landon pooping. We think he is just so uncomfortable from using him lower intestine for the first time that it takes his breath away. Just to be sure this is related to him learning to poop, his doctors are doing some tests. They are testing to see if these episodes may be seizures or if something weird is going on with his heart. There is a very small chance that this is anything other than a pooping issue, but better safe than sorry.

Potato Head Baby

We had another crazy week in the NICU, more crazy then a typical NICU week. We were still reeling from the shock of Landon's broken femur, his possible infection, and being put back on the vent when we got more bad news. Every other week he gets an eye exam for a condition common to preemies called ROP.

It is unknown what completely causes ROP in preemies, but doctors believe it has something to do with the oxygen many preemie babies need in the NICU. Basically, a baby's eyes mature in the third trimester and the oyxgen levels in the womb are optimal for that eye growth. When a baby is born very early like Landon was, they often need high amounts of supplemental oxygen to help their lungs work. Researchers have found that since this oxygen is not the optimal level as in the womb, it can cause the blood vessels in a baby's eyes to grow out of control. In the worst cases, the blood vessels can grow so out of control that the retina could detach causing blindness.

There are different stages of ROP depending on how bad the blood vessels are out of control and where in the eye those blood vessels are located. In Stage 3, most eye doctors will recommend laser surgery on the baby's eye to destroy the part of the eye that triggers blood vessels to grow. This causes a loss of peripheral vision, but saves his overall vision. Once a baby's eyes are mature, then the risk of ROP is gone. Since maturity often occurs around 42 weeks, Landon only had a few weeks until his eyes were mature. Most preemies have a small amount of ROP that resolves as they get older. Landon had a small, unconcerning amount in every exam. This wasn't too scary given that almost every preemie baby in the NICU had that same amount.

That was until this past Monday's exam when we were told his left eye was now Stage 3 and coming extremely close to needing surgery. This was such a shock when all of his exams had been clear and he was so close to having mature eyes. Not to mention all the other bad news we had gotten, this really was a hard blow. We decided to be proactive about treating this condition. I remembered that one of the doctors had told me about a new drug that recent studies have shown works just as well on ROP as the eye surgery without the loss of peripheral vision. I immediately read the research on the drug and requested that his eye doctor consider trying this drug in an attempt to avoid eye surgery. After some back and forth, the eye doctor agreed to try it and he received the injection on Thursday. We were told it should only take a few days to see if it worked and the doctor will be back on Tuesday to check. We are hoping and praying that this one thing goes right for baby.

Now that you know more about preemie eyes then you ever wanted or needed to know, on to the good news! Landon was able to get off of the vent and is now back to the baby elephant mask woohoo! We hope this is the last time he is on the vent before his stomach surgery. Even more importantly, Landon started getting fed breast milk on Friday! His is very slowly being fed small amounts through a tube in his nose to get his gut used to food and digestion again. So far it has gone ok, though his poor tummy is bloated. That is not a total shock, imagine if you had not eaten in 3 weeks and then starting eating again, you would have some bad gas!

It is important he tolerates his feeds for a few reasons. First, the breast milk will help his bones to grow strong. It will also help his liver as the nutrient fluid they are currently using has been very hard on his liver. Also, we will eventually be able to bottle feed him. Though there is a small chance that having the vent tube in his throat for so long may have created an oral aversion for him, making him not want to put even good things like bottles in his mouth. We will hope that is not the case and look forward to the day we give him his first bottle! The last reason why it is important he tolerates his feeds is that if he cannot tolerate breast milk, he will need to have his stomach surgery sooner than would be best for him. The bigger we can get him before surgery, the better off he will be.

On the upside, Landon has grow by leaps and bounds! He is nearly 7 pounds and still growing. This means he is right on track to be on a normal growth percentile for his adjusted age. We laugh because when we saw him first on an ultrasound, we called him pickles since he looked like a pickle. When he was born we called him a peanut and now I call him Mr. Potato Head because he is so big his head looks like a potato. Which probably isn't as bad as when I call him a Tomato head (this is when he cries.) He is almost so fat we may have to call him a yam soon!

Hello Old Friend

Our little man has had a few crummy days since his femur broke. On Thursday night Landon had more and more difficulty breathing. We feared the combination of pain and his increased need for morphine was making it too hard for him to breathe on his own. (Morphine is known to slow breathing in babies.) Friday morning our fears were confirmed with an early morning phone call from Landon's doctor, Dr. Scott, letting us know he had to be put back on his old friend the ventilator. The doctors also put him on antibiotics for the small chance that his trouble breathing was due to another infection and not pain. Our hope was that he would only need to be put on the ventilator for a few days while we got his pain under control. The worst part of this is that the doctors decided not to feed him breast milk yet. This was incredibly frustrating as getting fed is the only thing that would help his bones to get stronger to prevent future fractures.

Although we were upset over this latest setback, we figured it was only a few days we lost. Unfortunately on Saturday morning we had another morning call from one of Landon's residents, Dr. Dusty. The small chance that he had another infection had become a reality as his blood pressure dropped, his kidneys began to stop working, and his white blood cells increased. Thankfully, he was already on antibiotics, but he needed to be put on blood pressure medicines to bring his blood pressure up. He also had to receive blood. Anytime a baby needs to be on blood pressure medicines for infection, it is a pretty scary time.

Thankfully, just a small amount of the medicine worked to raise his blood pressure and he began to urinate again. This was good because they had stopped giving him the nutrient rich fluid when he stopped urinating the night before. This is because his kidneys couldn't handle the filtration of that fluid at the time. The downside to that was another day without the nutrients like calcium that Landon needs to heal his bone. Once he began to urinate he was able to get that fluid once again. Another side effect of not urinating is that he swelled up nearly a pound bigger than he normally was. We had a mini sumo wrestler baby again!

The doctors haven't decided how long he will need to be on antibiotics since they cannot tell where the source of the infection is yet. They don't think it is in his belly, though it may be possible that bad bacteria from the last infection in his belly got into other parts of his body. Now it is just a waiting game to hope he continues to get better. Today he was able to make it most of the day without morphine and needed no blood pressure drugs. He continues to urinate and is slowly shrinking from his sumo wrestler state. We hope to get him off of the ventilator again by the end of this week since Friday starts a new month with new doctors. We continue to pray for patience and faith in God's plan that there is a reason for these 'speed bumps' and we will one day take him home where he belongs.

Break a Leg!! Isn't that supposed to mean good luck?

I haven't shared my view of the Landon saga until now. My wife has provided new courage and has allowed us to share our story with so many people. Our struggles have brought people together and have helped support us during these trying times. Tracy has put her life on hold in order to help keep Landon alive from bed rest to the constant care at the hospital. Day and night she dedicates every minute she has in order to provide support for our son. I cannot say enough of her dedication and love for our family and especially Landon.

Today was going to be a semi routine day for us: wake up see Landon, off to work we go. He was scheduled for a contrast study on the lower half of his bowels. In case you forgot his gut is divided into two sections, the upper half and lower half. The day before a contrast study was performed on the upper half in order to test for any leaks or strictures that would prevent any feedings. In aviation terms the upper half was an ops check leak check good, feedings are a go for the top half. Today a contrast study was planned to be performed on the lower half.

Tracy went to the hospital earlier then me in order to be there for the contrast study and since I work late I wanted an extra hour of sleep. When I was getting ready for my trip to the hospital I noticed Tracy had called. When returning her call I kept rehearsing to myself excuses of why I haven't left the house yet, such as the dog was being bad, I was making the bed for her, doing the dishes or just plain being lazy. My phone rang and at the other end was Tracy and the tone wasn't the chipper wife I'm used to hearing. She collected herself enough to tell me that Landon's right femur was broken. My heart stopped as I quickly got ready and rushed to the hospital to see my son. A person can only handle so much weight until they give away but I have to keep reminding myself that its Landon who is pushing the weight back up and Landon is the one who keeps fighting no matter what is thrown at him. I arrived at the hospital worried and upset and wondering why but I stayed strong in front of my son in order to show no fear. Of course I stand there asking myself how or who but that doesn't matter what's done is done. I have to care for my son and let him know that he will be okay and the girls will dig him for the pain he has endured.

Since Landon has been without proper nutrition his bones have become weak over time and proper minerals were leaving his bones in order to care for other parts of the body. His bones obviously became brittle enough to break. The break could've of happen to anybody without notice but thank God for the contrast study x-ray or this would've been unnoticed to the naked eye. Without the x-ray we would've continued to think Landon was cranky and just needed more love from his parents in order to keep him happy. He still enjoys the simple things in life, glow worm, oxygen, a clean diaper, and of course mom's warm hand.

Tracy and I often think about when are we going to have a break or when will we be able to sit on the couch all day and watch TV with Landon. But we often remember that the one person that isn't ever asking for such things is Landon. He doesn't get to go anywhere or get away to have a tasty treat (beer for me, tasty treat for the wife) when times are rough. He hangs out in the same spot and battles everyday to show how much love he has for his parents. His eyes gaze towards his parents to let us know that he is here and he will come home.

Although going to work everyday is tough, I want to thank everybody there that has showed their concern and gratitude towards Landon, myself and Tracy. The laughs I gain from my peers carry on to Landon which in turn helps him get through another day. I cannot thank enough the flexibility my work has provided in order to care for my son. Tracy's hard work and dedication to her job has showed Landon how inspiring his parents can be, which keeps him going. Our friends and family have been there providing us with care without even asking for it which we are truly grateful for. We cannot express how much we thank everybody that has helped us during these trying times.

I know my writing isn't as good as Tracy's and everybody looks forward to her book quality post but please look past my missed punctuation, grammer or whatever.

The Adventures of Miracle Baby and GloWorm Friend

First of all, Happy First Father's Day to my husband who is really the standard by which other fathers should be set from! Landon had a terrific week, doing so well with the pressurized oxygen mask that he is able to switch to just a nasal prong oxygen delivery system for a few hours a day. We love when he is on the nasal prongs because he is much more aware and wide awake without all of the pressure in his face. Nasal prongs are very important because they are giving him the opportunity to build his lungs so eventually he will be able to breathe with less and less oxygen support. You can see so much more of his face and (though I am probably extremely biased) he is really really cute!

Landon also began work with the NICU's physical therapist, Dan. Dan's job is to assess how Landon is doing from a physical and cognitive perspective. He does this by working his muscles with stretching and helping Landon to learn to calm himself when he is upset. Dan is amazing and obviously loves working with the NICU babies. He was impressed with Landon in his initial session. Although Landon is behind in some of his motor function, Dan assured me that Landon has the cognitive capacity to catch up. It is no surprise he is behind when he was immobilized for the first 9 weeks of his 11 week life due to being on the ventilator.

Also, the third trimester is a time for babies to build muscle tone and learn to calm themselves by doing things such as putting their hands to their face and sucking. Since Landon was not inside me for the third trimester, he needs to be prompted to use what is really reflex for full term babies. The good news is that with Dan's help, we have been working with Landon and we have already seen his progress with calming himself. Even more amazing is when Ryan and I stand at each side of his crib and call his name while we watch him turn his head to see who was talking. I can't wait to see how much further he progresses each week.

On the gut front, he has completed the 14 day antibiotic course from his last infection, but won't be fed until sometime next week. The surgeons want to perform a procedure on him before they begin to feed him. They will inject a contrast dye into his stomach in order to make sure there aren't any more holes or blockages that could cause problems if he ate. If that test comes back clear, they will begin feeding him again shortly after. I know he is one hungry little guy and will be happy to be fed again. Imagine not eating for 2 weeks and having to breathe on your own which is the equivalent of 24/7 aerobics to a preemie...not very fun. He definitely shows us how irritated he is by all of this by turning into the baby version of the incredible hulk a few times a day. Usually his best friend the GloWorm is enough to calm him down (sometimes with the added help of his other friend Ativan). GloWorm has the added benefit of being a developmental toy, I think Landon prefers looking at it more than me sometimes! He has every reason to be angry and thankfully he has a cute face so it is easy to forgive his tantrums :)

This week was also significant for me because I started work again after being off since February. Google offers an amazing maternity package and I actually still have a few months left, but I decided to go back on a part-time basis now in order to save some time for when he comes home. I figure he is basically in the world's most expensive day care with amazing caretakers, so I don't need to worry about him when I am not there (though I do). I am working in the afternoons 4 hours a day so I can be at the hospital in the morning when the doctors and nurses come up with Landon's plan for the day. I jokingly told his medical team I have to be there in the morning because how else will they come up with a plan without me. After work, I go back to the hospital so I can give Landon his bath and hopefully feed him once he starts eating again.

My first week went amazingly well. I thought it would be weird to join the 'real world' again after being at the hospital for so long. However, it was easier than I thought it would be. It was nice to see all of my co-workers who are really like family now. It was also nice to do something productive that I am good at that didn't involve anything medical. I am so blessed to work for a company that is so incredibly accommodating. I will work until Landon has his stomach surgery and then take the rest of my maternity time for his healing and when he comes home. We still don't know when that will be and truthfully I am afraid to ask again for a time frame since the setback with his last infection.

For now we are content with the amazing progress he has made just in the last week. We know he will continue to learn and grow and heal so that one day he will come home and be the perfect little boy we know him to be.

Return of the Elephant Baby

Our Little Lion managed to exceed our expectations again and came off of the ventilator with flying colors! On the morning of the day his team planned on taking the ventilator out, Landon had a very hard time keeping his heart rate and oxygen levels up. It was so bad that his team wasn't sure they would be able to turn off the vent. They had two choices, to take him off of the vent and see what happens or to leave him on the vent and sedate him to high heaven to prevent him from taking the tube out himself.

The biggest fear was that if Landon failed to stay off of the vent again, he would have to have an intense exam by an Ear, Nose, and Throat doctor to determine if there was something blocking his airway. This is something we all wanted to avoid, because it involved putting more tubes and exam tools down his throat which would just irritate him further. His doctor decided to go for it and once the tube was pulled out, Landon decided to grace us all with the present of breathing on his own. He was pretty mad at having so many people gathered around him and doesn't particularly care for the mask that delivers pressurized oxygen to his face. However, we think he is the cutest little elephant baby that there ever was.

It has now been 2 days that he has been off of the vent, and we hope he continues to be a rock star and breathe on his own. The vent is still sitting unused next to his bedside and hope it's presence is enough to ward off any evil spirits that cause bad breathing! On the infection front, his belly continues to do better every day. He is more than halfway through his 14 day course of antibiotics and will not be fed breast milk until it is completed. We are worried about what will happen when he starts to be fed again, but will cross that bridge when we get to it. He continues to have problems with his blood levels, making it hard for his blood to clot. He does receive blood transfusions for this and when he is able to keep his blood levels up himself, we will know that the infection has been completely resolved.

In the meantime, we are so grateful to God and all of our family and friends for their support during this latest scary time. Landon's nurse Kimmy said today that he must be destined for greatness because of everything he has been able to survive. I know he is already great because of his ability to unite so many people in support of his fight for life!