Trying to Give His Mama an Ulcer...

Happy Thanksgiving!

Turkey Butt!

Go Lions!

Mama, I don't feel so good...

Auntie Em

Laughing with Daddy

With my uncle Mike!

Trying to roll out of the ER

November has flown by, just like the rest of this year! It is hard to believe that next week I will have an 8 month old. An 8 month old that causes drama for his mama, but a beautiful 8 month old nonetheless. Landon has had quite the adventure since I last posted. First, we had his appointments with his cardiologist and his lung doctors. We were slightly saddened to learn that his heart was still enlarged. This wasn't totally unexpected, but you always hope for the best possible outcome. On the upside his pulmonary hypertension hasn't gotten any worse. This is a good sign as he gained so much weight, he was probably outgrowing the dose of his heart medicine. This means that although he wasn't cured, he was able to maintain with less medicine, a trend in the right direction. We adjusted his medicine up for his weight and hope to have better results when they test again in a few months. This, like his lung and liver issues, will only get better with time as he gets bigger. 

They were extremely impressed with his weight gain and his fat arms and legs. We hear over and over again from doctors and nurses who haven't met him but have read his lengthy chart, that they expect to see a sickly and puny baby, not a cubby one. The cardiologist asked if we have had any issues with him not breathing or turning blue and seemed surprised that it hadn't happened to us yet as it is common for these former micro-preemies. I should have covered Landon's ears during that conversation as I think it gave him ideas on how to cause trouble a few weeks later....(more about that in a minute). 

We had some time between the cardio and lung visits so we took a trip to the NICU and saw Landon's other mother nurse Kimmy! We also got to see a lot of our other NICU friends like Drs. Megan, Nancy, Shawna, Scott, Tony, Chapman, Levanthal and many more! We promised Kimmy Lando would remember her and he didn't disappoint. He stared at her and was so happy!

After the NICU visit, we went to check on Landon's lungs. Overall, they were happy enough with his progress to stop one of his medications to see how he would do without it. Of course that made me VERY nervous, but I also know that we at least need to try. Breathing is still a pretty big workout for him and with cold and flu season here their goal is not to get him off oxygen right now but to try to keep him out of the hospital until cold and flu season is over. Our hope is that by his 1st birthday in April we will start having plans to get him off of the oxygen, but for now we have to look at oxygen as a medicine. He needs it to get strong and grow. His doctor and nurse pointed out that if an adult had the lungs (or liver or heart for that matter) that Landon has their prognosis would be pretty grim. Luckily, Landon is a baby and growing at such a phenomenal rate that the diseased and damaged parts of his lungs, heart, and liver should be a smaller and smaller portion of the organs.

At the lung doctor, we also discussed Landon's pretty severe acid refux after eating. Basically, his stomach acid comes up his throat, which is extremely irritating to him. Sometimes, he even has a hard time breathing when the reflux occurs. We decided to put him on medication for it and change the formula I add to my breast milk to soy to see if that made a difference. In typical Landon fashion rather than making the situation better, the switch to soy was so traumatic for us all I am pretty Ryan and I developed stress ulcers (figuratively speaking)!

Landon was on soy milk for about 4 days when he started having issues breathing. He would breathe so hard that you could see his little ribs sucked in with each breath. On top of that he was having a hard time pooping and for those of you who followed us in the NICU, we all know pooping is not Lando's favorite thing in the world! It all came to a head when he decided that breathing was optional and began taking 'breaks' between fast breaths and changing color with each break. Our pediatrician instructed us to go to the ER. We had really hoped to avoid the ER and were saddened that we only made it 6 weeks at home before we had another hospital visit.

We were rushed into a room as soon as we arrived, which was very nice because the ER is a hotbed of germs. He was given a breathing treatment, which started to help him pretty quickly. In fact he started laughing and playing around. We started to think that maybe Lando just missed his hospital friends and tricked us into a visit. Although we suspected the formula as the cause, they had to make sure there wasn't another virus or other illness. He had to get an x-ray, which didn't bother me since he had them almost on a daily basis in the NICU. However, the NICU brought the x-ray machine to you, and this was my first time with an x-ray in the radiology room. For those of you who have had their baby get a chest x-ray, you can attest to how traumatizing it can be! They strapped him onto a board hanging from the wall with his arms strapped up and a chin strap to keep his head still. I don't know who was more upset: me or Landon.

After they took the x-ray, they decided to much an IV to get him fluids as they were waiting to let him eat. After two veins in his arms were ruined, they ended up placing the IV in his head. Although it looked terrifying, Landon didn't mind it too much. It was decided that he be admitted for at least a night. When a baby has a history like his, they don't take any chances. We were starting to think we would be spending Landon's first Thanksgiving in the hospital.

The scariest part was that our hospital has shared rooms and places kids who may have a virus in the same room together. Meaning that if Landon wasn't sick with a virus, but instead had a reaction to the milk, he was now being exposed to a kid with a virus. This won't be an issue in two weeks when our hospital opens a new children's hospital with private rooms, but as he has done his whole life, Landon just couldn't wait. We were placed in a room with a child that had a terrible cough. She kept crying, which of course started to upset Landon, as he hates when other kids cry. He perked right up when he saw one of his favorite doctors, Dr. Brendan who happened to be doing a rotation on the floor we were placed on! I was soooo happy to see him. I had just finished a crying spell over seeing Landon's name tag placed on his crib. It wasn't that long ago that we had rejoiced at taking it off!

It was reassuring to know that Dr. Brendan who knew Landon well would be taking care of him that night. He let us know in the morning we would have Dr. Courtney, a double blessing! By the time we got into the room, Landon was acting quite well. He had not had formula in 8 hours and that became more and more likely the culprit. They decided to start feeding him his old formula and breast milk to see how he would do. It was a looonnnggg night staying in the hospital, holding my breath (pun intended) that he would not have another breathing issue, but he did just fine (not to mention slept better than I think he ever has at home). The weirdest part was seeing doctors who took care of him when he was just born. The expressions on their faces when they saw how big he was was priceless!

It was finally determined that the soy was more than likely the culprit and they let us go home the next day. This visit was such a reminder that even though taking care of Landon by ourselves is not easy at home, it is still a blessing to be at home. We are so lucky to have the care team we do at the university of Michigan hospital, they really are our family and helped us get through another crazy ride!

We were able to have Thanksgiving at home and Landon had a great time! He stared at the food and drooled, making me think he will feast next year when he has teeth! Of course there are not enough words to express how thankful we are for this past year, for our beautiful son, for our friends and family  (especially the ones who we had the privilege to gain during this journey).  I was reminded how lucky we are earlier in the week on November 17th, which was World Prematurity Day. The March of Dimes hosted a facebook page for parents to tell their baby's stories. I was saddened to see so many babies who experienced what Landon did, but didn't make it and heartened to read the stories of those who did. We get to experience a miracle every day and who wouldn't be thankful for that?

Just a Dude with Tubes

Mommy wanted to see what her baby looked like without his accessories (he was cuter than I imagined :)

High Five!

Little Lion Man

Loves his Granna

Daddy as Gumby for Halloween

First Pumpkin (Squirrels ate it, but daddy went to the store and made a new one)

Final hospital bill...we have a million dollar baby!

In his Sunday best

Seeing Granna Janet for the first time

It has been awhile since I lasted posted, our lives have definitely become more action packed! Little man continues to grow and learn at a fabulous rate.  If you were amazed by him by his feats in the NICU, you would be blown away by everything he has accomplished since coming home. We had a very busy end of October. Landon experienced his first Halloween (as a little lion of course), had a visit from Ryan's mom Granna Janet, learned to roll over, gained a pound (we are now 11 lbs), turned 7 months old and began taking whole bottles more often.  So many accomplishments for our little dude with tubes. I have a feeling we won't be having those tubes for too much longer if Landon continues to blaze his way into being a big boy.

Landon also started physical therapy to make sure that he can catch up to his real age. Right now he is hanging out closer to his adjusted age of 4 months when it comes to motor skills. This is totally expected given how early he was and most babies catch up by age 2. Studies have shown that early intervention services like physical therapy can aid babies in catching up. This is especially important for Landon because he was so early and experienced bleeding in his brain along with a serious illness early in life. These are all high risk factors for complications such as developmental disabilities and cerebral palsy later in life. Although Landon is coming along wonderfully and showing no signs of serious affects from his early birth and arduous journey, he is still is at risk until about age 2. This is scary and makes us anxious, but like everything else we must offer it up to God's hands and pray our little guy continues to defy the odds. 

Landon turned 7 months last week, it is so hard to believe how far we have come. Last year at this time I found out I was pregnant with him. I was excited and nervous and puking at every McDonalds McRib commercial. From the beginning of my pregnancy, I knew something was not quite right. I knew I wasn't going to have a normal journey, though I could never predict the crazy journey we actually had! It was a mother's intuition and that same intuition tells me that we will be ok. This is still very hard taking care of such a special and high maintenance little boy, but I have a good feeling that it will get easier and easier as Landon continues to grow and improve. It doesn't hurt that we have such an amazing support system and all of you praying for us!

Speaking of support systems, we were lucky to have Granna Janet with us for the last few weeks. Landon was happy to finally see his Granna while he was not on a vent and I know she was happy to see the real Lando! It was so nice to have someone helping us with cooking, cleaning, and taking care of Landon. It was definitely hard to see her leave. She was able to see Landon's first halloween where he managed to keep his costume on for a total of 10 minutes (long enough to visit the our next door neighbor's house) before having a total meltdown. I am hoping for a better time next year, though Ryan in the form of Gumby had a wonderful time handing out candy. None of the kids knew who he was, but the parents got a kick out of him!

Ryan and I wanted to note that November is Prematurity Awareness Month. It is important for people to understand the risk factors of prematurity and the devastation (and joy) they can cause. There are many wonderful organizations such as the March of Dimes that work to prevent premature births that we want to make sure are on people's radar. The research done by this organization could make it possible for Ryan and I to experience a normal, term pregnancy one day (once we get over the post traumatic stress of Landon's pregnancy). Many of our preemie mom friends have told me interesting preemie facts in honor of prematurity awareness month such as the fact that Stevie Wonder was not born blind but rather premature and experienced ROP (the same disease Landon had). Thankfully research gave Landon a different outcome, though we wouldn't mind Stevie's musical ability!

Next week we have a big week for Landon. He is going to the eye doctor to check his vision and more importantly to the cardiologist to determine if his pulmonary hypertension and the resulting early heart failure is resolving. Our hope is that his heart looks better so we can start working on getting Landon off oxygen. In the meantime, we continue to work with him to hit his milestones and be the superstar he always is!