A 100 Days Confession

Today Landon's intern mentioned that he has hit 100 days in the NICU and said he deserves a party. The first thing I thought was 'what is there to celebrate, it has been 100 days and there is no end in sight.' She is right though, he deserves credit for every minute he has been alive. We have 100 days with him that my doctors said would never happen when my water broke. Regardless of what happens from here on, we are so lucky for these days.

I have to confess, Ryan and I try so hard to put the image that we are handling this effortlessly, but this is hard. When I was on bedrest, I would be sure that he was going to come nearly every night. I begged God to allow him to stay in me just one more day and he did. I am not perfect. I want to have faith and patience and strength in God's plan, but sometimes this seems like an impossible task. Last week was particularly impossible with the obstacles Landon faced.

He continued to drop his heart rate and the oxygen level in his blood to the point of needing resuscitation more than 6 times a day. Finally, it got so bad he had to be put on the ventilator. On top of that, they stopped feeding him just in case his heartrate problems were due to an infection in his belly. And then came the hardest news of all, they did a test to see how Landon's heart was working. It showed signs of a condition called pulmonary hypertension, which essentially is the first stage of heart failure. This condition is not uncommon with babies who have bad lungs. Their lungs are working so hard that it causes the heart to work too hard as well. Thankfully, Landon just shows the beginnings of this condition and it is still very treatable. His doctors are still figuring out the best treatment plan, and we should have a better idea of what they will do over the next few weeks.

After the discovery of his heart problems, some bacteria cultures showed that Landon had an infection in his throat. This more than likely caused the sudden onset of low heartrate and low oxygen saturation. He started to feel and act much better within a day of getting antibiotics for the infection. Today, he was feeling so much better that they were able to take out his vent tube. This was good because he HATED the vent much more this go around than any other time because he is older now. Our hope is that the infection made his heart show signs of pulmonary hypertension and once he is done with antibiotics in a few weeks, his heart will look better.

Just to make things even more interesting, his right eye caught up with his left eye and was on the threshold of needing surgery. He received the injection in his right eye as an alternative to surgery and so far it seems to be working. They will have to keep a close eye on both of his eyes, but hopefully his eyes continue to grow as they should. We do know he can see though because his new thing is to stare at the pooh bear stuffed animal we got him. We think he may like him because he is yellow and Landon is pretty yellow due his poor liver function. It is his brother from another mother!

I have received many questions about when Landon can go home. Trust me when I say that question is always in the back of my mind. The short answer is that it won't be any time soon. Although he is big enough to have his gut surgery, he is just not stable enough. He has to be off of the vent for an extended period time. They would also prefer him to be at full feeds of breast milk for a period of time to help his liver to start working better. These things will happen on his (Landon's) and His (God's) time. I wish I had a crystal ball to see when this will be. Instead I must pray for faith and strength and patience.