Countdown....

It has been a bit of time since I last wrote. Although I know many people are anxious for updates because you have fallen in love with Landon like his mommy and daddy have, it is a good thing that I haven't posted. I haven't had much time between getting the house ready for him TO COME HOME and winding down work so I can go back on leave to spend time with Landon AT HOME.

Landon has officially been designated a feeder/grower in the NICU. Babies who are feeder/growers are ready to go home as long as they are showing growth and tolerating their food. We are now just waiting for Landon to finish the transition from bring fed continuously through the tube in his nose to his stomach to being fed every 3 hours through a combination of bottle feeding and nose tube feeding. Basically we are on pins and needles praying he doesn't puke up his feeding. His poor little tummy needs to learn to accomodate a large amount of food at once rather than the tiny amounts he got continuously.

On the upside, this transition is allowing him to start bottle feeding better because he now gets hungry between feedings, something that didn't happen before when there was always food in his tummy. He gets so hungry that he forgets he doesn't like the bottle and hungrily sucks it down. He still has issues with coordination and can't take his full feed in the bottle, but we hope to get him to be able to do so in the next few months.

It is hard to imagine that we are so close to going home. As long as nothing crazy happens (and with Landon I wouldn't be shocked), we should be going home in the next two weeks possibly even sooner if he decides to cooperate (for the first time in his life :). His room is done and his little baby clothes are washed and ready to be worn. All frantically done this weekend when we realized how close we are to home.

Now that we have mastered life in the NICU, we have to face the unknown once again when we are home. Everyone has told us that babies do so much better at home and we can't wait to see what Landon thinks of his room and doggie! We are learning how to change his feeding tube and give him his meds. We will also have oxygen and possibly a monitor to let us know his oxygen levels. Not exactly things most people have to deal with in the first nights home with a new baby, but we are so grateful to be going home, we can't complain!

Sometimes it feels like the last 8 months of our lives have been on hiatus. Once baby is home, we will finally take the pause button off our life and start living again. We are nervous to learn how to be parents without the assistance of doctors, nurses, and monitors. We have been very well prepared and I am confident we can do this, though that doesn't take away the anxiety! I hope my next post is the one we have all been waiting for....

Landon the Wonder Baby

First, I have to wish a happy birthday to my wonderful father and Landon's loving papa! Today was a day for reflection for a lot of people. Remembering where you were 10 years ago when life as we knew it changed and trying to remember my 20 year old self has been interesting. I can honestly say I never envisioned my life would be quite the way it is now 10 years later, but I imagine those who lost people on 9/11 never imagined their lives to change the way they did on that morning 10 years ago. However, you hear how people survived and grew and thrived out of that tragedy and I know we can continue to do the same.

This week was certainly a test of our strength and resolve. Ryan likens it to being the last month of senior year of high school and you just keep failing the one test you need to pass to graduate. Our little wonder boy continues to amaze us, though this week I think I was once again amazed how this baby can manage to get every complication possible. At the beginning of this week we were hoping to start planning for Landon's homecoming. His nurse Kimmy had taken a vacation for the last 10 days and fully expected to come in on Monday ready to give us the boot out of the NICU. Unfortunately, that wasn't the case.

Landon was tolerating his food really well and even taken a good portion of his food by bottle rather than through the Gtube. I even tried breastfeeding him and he did a wonderful job! The joy from this moment was diminished when I realized I was all wet. I thought it was because Landon peed on me (has happened a few times) but instead I realized it was all of the breastmilk he had just consumed coming out from around the hole of the Gtube. Although we were told a leaky tube was a possible complication of the Gtube, it was a rare complication. I should have known as soon as the word 'rare' was used, we would be in trouble.

Normally, a leaky tube is treated by securing the tube so the skin can heal. However, Landon decided to take leaky to a new level when a large portion of his food and meds would come out of the hole. The bigger complication was that stomach acid is like battery acid to the skin. My poor baby's skin began to burn away in a bigger and bigger hole. It looked so angry and possibly infected. The docs had to put another tube in Landon's nose past his stomach to feed him because they couldn't feed him with the Gtube while it was leaking. This was incredibly frustrating as I didn't want the Gtube in his stomach to begin with and now it wasn't working. They had to take the Gtube out because the skin was so eroded away it couldn't support the tube anymore. This means we will end up taking him home with a tube that goes from his nose to his stomach until he can take all of his food by bottle.

The worst part is that we have had to hold off on feeding him by bottle while his stomach heels. Every day without a bottle is another day closer to him losing the ability to suck and feed himself with a bottle or by breastfeeding. He also had to go on some heavy antibiotics just in case there is an infection at the hole site. This needs to be healed before we can plan on going home. It is so hard because we were so close to going home and can't stand one more set back.

On the upside, Landon is much more happy now that the Gtube is out. He even got to go outside in a stroller ride! When we returned from it his nurse laughingly wondered whether we would come back from our walk or make a run for it. I'll admit I thought about it! He also discovered a fascination with mirrors. He loves staring at himself in the mirror and is so funny when he looks at me in the mirror and then turns his head to see me out of the mirror. He sees two mamas and doesn't get which is the real one! He is so smart.

I also have to give a quick shout out to a few people this week. I will admit I may have had a minor meltdown with the Gtube drama. The irony is not lost on me that I managed to make it through everything else, but fall apart at a skin problem. Our nurses Kathy, Kimmy, Pam, Paula and Barb kept me sane while helping me to figure out how to make Landon most comfortable. I think we paged our surgeons Dr. Keith and Dr. Ana a million times to look at his stomach and they never seemed annoyed with us and were wonderful to talk to us and explain our options. We also had Dr. Brendan and Dr. Shawna who worked with the surgeons until we came up with a plan that made everyone happy. We are so lucky to have all of these wonderful people in our lives! I hope I did not forget anyone but in my defense if I did, I managed to get a slight concussion running into a metal pole while escaping a genetically engineered monster spider in the basement. (Dr. Megan came for a visit with baby today and assured me that the part of my brain that I smashed is the personality part and I have plenty of that so I should be fine haha).

Big Boy Crib

It has been some time since I last posted because we have been busy helping Landon grow (and working and getting the house ready for him). He is doing well after his surgery . I can't believe how good his incision is healing, the image of his intestines being on the outside is slowly disappearing from our minds.

He is really exceeding our expectations for his recovery after surgery. He is already getting his target for breast milk through a combination of the tube in his stomach, breast feeding, and a bottle. So far he seems to be tolerating all of that food well and has been pooping well! He hasn't had issues with throwing up his food, which was a concern after having a stomach surgery like he did. In fact, he really loves to eat and lets everyone know it when he is hungry.

He hasn't started gaining weight as quickly as they would like, so they will start fortifying his food with extra calories and nutrients. Hopefully, this will be enough to get him to where he needs to be to go home! I was thrilled yesterday morning when the doctors talked about their daily plan for him and said he was working on feeding and growing. Our whole NICU experience we have heard other babies be called 'feeders and growers.' These are the babies that are close to going home because they just need to learn to eat and gain weight. Though Landon isn't totally a feeder grower, he is close and it is nice to finally be in that category!

In typical Landon fashion we have had some speed bumps in the last few weeks. First, the tube in his stomach being used to feed him has developed a leak. The hope is that this will slowly go away as his stomach heals around the tube in the next 4 weeks. In the meantime, he is basically leaking stomach acid onto his skin, which isn't all that comfortable. We have to be diligent about cleaning it off of his skin so his skin doesn't erode. I don't know why we were surprised by the leaking given that between me and my amniotic fluid leak and Landon's ostomy bag leaks, we have been leaking for the last 7 months!

We also get some disappointing news about the state of both Landon's liver and heart. When he had his surgery, the surgeons took a biopsy of his liver to determine the damage that the TPN nutrition liquid caused. The damage was pretty extensive. This wasn't a surprise given how yellow Landon has been. Research shows that once a baby is able to get breast milk or formula and get off of TPN, it is possible for his liver to recover. The liver can recover if there is even a small piece that is intact and not damaged. We will not know if this is the case for Landon for many months. He is currently on medicine to help his liver recover. The surgeons think that he is capable of recovering and we pray that they are right.

Landon also received a test on his heart to determine how it fared after his operation. He had been on the borderline for pulmonary hypertension, which is a beginning stage of heart failure. This is very common when a baby's lungs are so bad that it causes their hearts to work harder. The operation was a huge stress on his body and the test showed that his heart was enlarged and having a hard time pumping the way it should. Luckily, there is a medicine that has been found to help this condition in babies that get the condition because of bad lungs. It takes about 2 weeks to ramp up this medication to the dosage needed for it to best work. We have about another week to find out if the medicine worked. If it does, it is possible that Landon's dependence on oxygen could go down.

Back to the good news! Landon passed his hearing test, a must for NICU babies before they leave. His most recent eye exam looked good as well, giving us hope that he will not have to have eye surgery. Most excitingly, he was moved from the isolette to a big boy crib! It was really hard on me to see him get into a crib. I was anxious for the change, but he has been so happy with the move that I can't be that upset. He can have toys and mobiles in the crib, which is important because he wants to be engaged with the outside world now that he is a big boy.

His doctors say it isn't unrealistic to think that he could go home in September. I hope this is our month because I know he will love his home and we will love to see him there :)

The Road to Recovery (with a few detours)

Landon has a wee bit of a difficult time with just about everything he has done in his short life and his recovery from surgery has been no exception. He did amazingly well right after surgery, but had a setback the next day. He needed a lot of blood during the night, which caused some complications because little babies like Landon have a hard time figuring out what to do with all the extra fluid the blood brings.

When you or I drink extra fluids or get a blood transfusion our bodies know where to put that fluid to help us. However, preemie babies haven't developed the mechanisms that control the fluid in their body very well and sometimes when their body gets a large influx of fluid, it leaks into places it is not supposed to be. In Landon's case, it migrates to his lungs and sits on them making it hard to impossible to breathe. The extra fluid also overwhelmed his kidneys so they stopped producing urine all the while his poor little body was trying to recover from a major surgery that completely changed his physiology.

This was too much for his body to handle and he ended up needing to be paralyzed and put on a very high support ventilator. He also gained a pound in extra fluid, making his body swell up. Although these were all expected results from his surgery, it is still scary to see doctors surrounding your baby trying to keep him alive and breathing. We are so very thankful to Dr. Ana (one of his main surgeons), Dr. D, and Dr. Allison who worked together to keep him breathing and comfortable so he could continue to heal. We are especially grateful to his other mother Nurse Kimmy, who changed her schedule so she could take care of him (and us) during this hard week. That is not to mention his other other mothers nurses Pam, Barb M., Barb K., Theresa, and Anne who always take such good care of him and called to check on him when they weren't there!

Thankfully after that one scary day Landon got back on the right track. He has slowly been losing the fluid weight and only needed to be paralyzed for a few days. This last week has definitely reminded me that every day in the NICU is like a present. Sometimes it is a pimple on your wedding day kind of present and sometimes it is an unexpected box of chocolates from your husband kind of present, but a present nonetheless. Today it was a good present because Landon got off of the vent for the FINAL time!!!!

We have spent all of our time in the NICU waiting for Landon to get his surgery and now that he has had it, we are now waiting for him to go home! Landon is awake and aware and ready to get on with him life. I can't wait to see what presents he brings us tomorrow and the rest of his life!

I have included pictures of him from today right after getting the vent. He is still a little puffy, but is definitely looking more like his old self. I think some of these pics have captured him looking at his baby angels. We tell him that the baby angels want him to get better so he can go out and live a life that they should have had as well. Just having him will help us to experience life as we never have before because of the gift each moment is.

I also have some amazing pictures that a photographer friend of ours, Andrew Langlois, offered to take. This was before his surgery, but I imagine we will have many more now that he is feeling better. There were so many beautiful pics I couldn't include them all (I may be biased that my child is ADORABLE). Andrew did an amazing job even with the bad NICU lighting and Landon's slightly yellowish tinge from being jaundice. I must make a shameless plug for him because of the wonderful service his did for us and because he is talented! His website is http://www.andrewlangloisphoto.com/ and we are so lucky to have him as friend.

MIRACLES HAPPEN!!!!!

Landon is out of surgery and doing AMAZING. As my Grandma put it, I don't know why we ever doubted him, he has done the exact opposite of just about everything they predicted. They said he wouldn't be born alive and he was, they said he would be on high level vents for possibly weeks after this surgery and he will probably be off the vent in a day or two once his anesthesia wears off. The surgeon kept standing over his bed, shaking his head, and saying 'amazing.' That is exactly what our boy is, AMAZING.

Yesterday we were able to take him for his first stroller ride. I was fixated on the idea that if something terrible happened during surgery, he would never have been outside. It was a huge production but we were finally able to get him out into the hospital courtyard with a parade of me, Ryan, his nurse Barb, and a respiratory therapist. It was an exhilarating feeling. The only downside is Landon slept through the whole ride! He woke up again once we wheeled the stroller back into the NICU. At least we now know how to get him to sleep if he is cranky.

Today was a hard day. We stayed at the hospital hotel and woke up very early so we could spend some quality time with him before his surgery. We envisioned not being able to see his eyes or hold him for several weeks and wanted to cuddle with him before that. He was pretty crabby because he hadn't been fed since the night before. He just kept looking up with me with a furrowed brow seemingly asking 'mama, where is my food?' He also kept looking up at the corner of his room. Ryan said he was looking at all his baby angels who were wishing him luck and taking our prayers to God.

We had what feels like everyone in the NICU praying for him and coming by to wish him luck in his surgery. We also had large networks of pray chains all over the world started by wonderful people like my Aunt Cindy, our honorary Aunt Mary Ann, our moms Janet and Cindy, Michelle (who's soon to be a mama herself) and my little brother and Dad who must have hunted down ever priest within a 100 mile radius of them to pray for Landon. That is not to mention all of our friends and family and everyone else who has followed our miraculous story. Every once in awhile you are given the opportunity to have moments where you are touched by the hand of God. Today was one of those days.

When they came to take him down to surgery, I just wanted to snuggle him and keep him in my arms. He helped the process by snuggling in his blankets and going to sleep as they wheeled him down. I included a picture of that above, along with how good he looked right after surgery and what looks like him plotting world domination yesterday.

Surgery was only supposed to take 2 1/2 hours, but four hours later we were still waiting on news. Those were a long 4 hours. I think for anyone who has waited for something it can seem like you have been waiting forever, have always been waiting, and will always continue to wait. We finally got word that he was back in recovery in the NICU, but the surgeon had to answer an urgent page and wasn't able to tell us how the surgery went. We finally got impatient and went up to the NICU to check on him. His 'other mother' nurse Kimmy ushered me to a beautiful baby boy.

I swear he looked better after a long and hard surgery than he did before it! He was wide awake and looking from me to his baby angels. He even smiled and seemed to be in no pain! In fact, the first thing he did was take those pudgy hands and wrap them around the vent tube in an attempt to take it out. We stopped him in the nick of time and he got another dose of some happy meds. He will need the vent for a few days just to give his body some rest to heal from a major operation, but given the outcome we were expecting of months on the vent, this is no big deal. His intestines and stomach look good and the surgeons expect him to have no problems with nutrition as he gets older.

He did need to get a small tube into his stomach. This tube will be used to feed him and put in meds until he can learn to take all of his food through a bottle. The bonus to the tube is that since it goes straight to his tummy, he no longer will have a feeding tube hanging from his nose!

The surgery did show that his liver is rather battered from the effects of being fed the nutrition liquid instead of milk for a lot of his life. However, the surgeons believe that he should be able to recover from this slowly as he heals. The best part of the day was when numerous nurses and doctors came to see him and couldn't believe their eyes on how good he was doing. I think the staff of the NICU needed a miracle, some good news to confirm the awesomeness of their jobs and Landon more than provided it.

I feel so blessed to be the recipient of so many miracles in my life. I am not sure I deserve them, but will take them because Landon certainly earned them! I can't wait for all of you who have prayed for him to meet him and truly know what a special little guy he is!

Countdown to Surgery

We finally got the news we have been waiting what seems like a lifetime to hear (well I guess it really has been a lifetime....Landon's lifetime). Landon's surgery to reconnect his intestines has been scheduled for Monday! We are both excited and nervous and cautiously optimistic. There is always a chance that his surgery could get bumped for another emergency so we will be worried until he is actually wheeled down to the operating room.

He has had a great week so far, although he has needed oxygen again due to some electrolyte issues. We are not too worried about that because when he goes to surgery he will need to be put back on the vent anyway so a little oxygen right now is not a big deal in the grand scheme of things.

The surgery is a scary and daunting thing. We know it is necessary for him to get well enough to go home but it is also a huge risk. The surgeons and doctors have counseled us well. This is a big surgery and he will get pretty sick after it. He won't look like himself and will need to be heavily sedated to make sure he is comfortable and doesn't hurt himself or pull out his ventilator tube. It is completely up to Landon how long it will take for him to recover. He may be on the ventilator for a few days or it could be months. This is because once his intestines are back in his stomach, there will be less room for his lungs to breathe. Since he already has breathing issues, surgery could make these issues worse.

Once again we find ourselves wondering what the future will hold for us. I remember sitting on bed rest wishing for it to just be over so I could know what was going to happen. Not knowing is worse then dealing with a hard outcome. At least when a hard outcome happens, you just deal with it versus worrying about the unknown where you can do nothing about it. It is hard to play with my baby today who is so active and happy and know the terrible pain he will be in in just two days. I wish I could take that pain away from him. My heart breaks knowing that he will go to sleep and wake up with a tube down his throat and a giant scar on his belly. What will he think? How long will it take for him to be the sweet baby we have come to know over the past 4 months?

I know there are angels looking out for my Landon. I sometimes notice him looking up in the corner of the room at the ceiling and smiling. There is nothing there that I can see, but I like to think there is his guardian angel or maybe another baby angel watching him and giving him the strength to fight. We continue to pray for patience and faith in God's plan for our little man. It is all we can really do.

In the meantime, I must borrow words from another preemie mom. I hope she doesn't mind me borrowing them as preemie moms are a special society of women who have a shared an experience that very few can understand. We say these words to our Landon that she said to her daughter and hope for his continued strength to fight.

Landon is a good boy. A strong boy. A fighter. Mommy and Daddy are not giving up, don't you give up. People will tell you you can't do things. They are wrong. Don't listen to them. This is the hardest thing you will ever do in your life, the hardest thing I have ever asked of anyone. It will be worse before it is better. But I promise you, I promise that we are right beside you. You are not ever alone. When I am not here, you are in my heart and always always on my mind. If you can get through this, I promise you that there is a wonderful life waiting on the other side. You are so loved and wanted. We will make this up to you. We will make this fight worthwhile.