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!

Sumo Wrestler Baby

First of all, a preemptive apology for the novella-like length of this post. It has been some time since I posted last and a lot has happened. Most important of all, Landon is feeling a lot better than he was last Sunday. We are not sure how or why, but somehow the infection in his stomach seemed to stop getting worse suddenly on Monday and he got progressively better each day. Only after he started to get better did his surgeons admit to us that they were very afraid that he was heading towards another hole in his intestines and surgery. Everyone was so thankful that this turned out not to be the case because our little fighter used his reserves to stop that infection in its tracks.

Unfortunately, there are a few side effects of having the infection that Landon has to deal with for a little while longer. First, when a little baby gets a bad infection and needs a lot of blood transfusions and fluids to fight it, they begin to swell up. In Landon's case, he gained about a third of his body weight overnight, causing him to swell to nearly 5 lbs! We dubbed him the sumo wrestler baby. Having that type of fluid weight also has the effect of simulating a very fat man sitting on your chest, making it harder to breathe. Due to this, the doctors had to give him a special medication to cause him to urinate out some of the fluid. And pee he did! In fact he peed on me several times and out the diaper and onto the bed several more than that.

Since he was doing so much better, his medical team decided to pull out the ventilator tube on Thursday. By that time he was feeling better enough to remember that he hated the tube and spent most of his day trying to pull it out or push it out with his tongue. We were excited to have him off of the vent again, and waited anxiously while they pulled out the tube. Though he hates the tube, he was still pretty mad once it got out. He dropped his heart rate to almost zero and turned a bad shade of grey/blue. We held him until he calmed down and finally he started breathing on his own.

All of the doctors left his bedside because they believed the worst was over. I sat holding his head and his arms hoping to keep him calm enough to continue breathing. After about 10 minutes of sitting like this, I started to hear a sound like a kitten crying. I thought it was one of the other babies because I had such limited experience with hearing Landon make any sounds since the vent pretty much prevented him from doing so in the past. I slowly realized that it was Landon the sound was coming from, but he didn't look like he was crying at all. The sound began to get louder until his nurse came over because she could hear it even with his isolette lid closed. It turned out the sound was actually wheezing. He had spent so much effort fighting the tube by wiggling his head, that is actually caused his upper airway to swell.

Even worse, the only thing the doctors could do at that point was put a new tube in. This is because his throat was so swollen it would be too hard for him to breathe on his own and they needed to get a tube in to keep the airway open. Everyone was pretty down to have to put him back on the vent not because he couldn't breathe, but because the vent tube had caused too much swelling. They put him on steroids to reduce the swelling and will try to take the tube out again on Tuesday. How we are going to keep Landon from taking the tube out himself before then is another story :). He is pretty mad the vent is back in and learned to bite us and his primary nurse Kimmy in retaliation. For a kid without teeth, that hurts!

In the midst of all this craziness, we did get some interesting news. I had a doctor's appointment that involved a procedure with a camera inside my uterus to possibly learn what caused my water to break so early. We didn't expect to get any answers, but for seemingly the first time since the beginning of this journey, we did. It turns out that I have some extra tissue inside my uterus called a septum that kind of sticks out. This septum essentially popped my amniotic sac like a water balloon once Landon got big enough to rub against it. The good news is that it may be possible for my doctors to surgically alter the septum in order to give us a good chance of having a normal pregnancy. Though having another baby is the last thing on our minds right now, it is nice to know that there is a possibility of a baby sister for Landon in the future.

Between Landon's infection and the failed attempt to get him off of the vent, Ryan and I were really looking forward to our baby shower on Saturday. I know it seems shocking that Ryan was looking forward to it, but he was really looking forward to the concurrent golf outing he planned for the menfolk while the ladies were at the shower. Ryan actually came up with the concept of a golf outing and shower at the golf clubhouse about two days after we found out I was pregnant. This means that beyond being able to celebrate with our friends and family, this shower also had special significance for us in that we were not sure we would ever get to have a shower once my water broke. It made the experience even more exceptional for us.

We had a lovely time at the shower, even though it was a boiling 90 degrees outside! It was so nice to see friends and family and spend a day just celebrating Landon. I am not going to lie, I did have a small anxiety attack over not being with Landon for the majority of the day. My only saving grace was that I knew Landon was in wonderful hands with his nurse Kimmy. After receiving some wonderful gifts for our special boy, we got to visit with him and was told how absolutely cute he had been all day! We were upset to have missed the cuteness, but glad he had such a good day. We can't wait for the day when we can bring him home and share how beautiful he is with everyone who has been praying for him and pulling for him to keep fighting.