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?