Sunday, September 25, 2011

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....

Sunday, September 11, 2011

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).