Sweetheart, I have to apologize for not writing in so long! I promise I have been by your bedside every day and night reading to you and giving you kisses! You are now 8 weeks old. Wow. I can't believe it has been that long. I feel so bad but I have been very worried about you and that is why I haven't been able to sit down and write to you and all of the people following along our journey. It is hard on the days when I don't have good news to tell you but I know that you keep fighting and are very strong! Sometimes I feel bad that you are so much stronger than me, though when I love on you, you know I am there for you.
Last week, we had a tough week. We tried to take out your chest tube but the fluid in your chest built back up making it hard for you to breath. Dr. Camps put another one back in and you seemed to do much better. It is odd though that you are still producing so much fluid. When the doctors checked the fluid they thought it looked like you developed something called a chylothorax. It is caused by the disruption of a duct in your chest that drains lymphatics and fat. So, this means you can't have my breastmilk because of the fat it contains. They have started you on a formula called Enfaport. This is probably the hardest news for me because I have been working so hard to make you the best milk and it is the only thing I know to do for you and now I can't because it is the thing making you sick. You are not getting all of the good stuff like antibodies and nutrients that breastmilk provides and that is so upsetting to me.
Your ventilator settings are stable but you like to get mad when we change your diaper or don't position you in just the right way and decide to desat. You calm down but you know how to let us know what you don't like. The blood pressure in the arteries going to your lungs is still high and we are trying to get the medicines right to lower that.
At the beginning of last week you had a lot of trouble keeping your feeds down when we fed you through a tube in your mouth. But all of a sudden you started to tolerate it better when we made the feeds slowly trickle into your belly. Right now we are still working up on the feeds in hope of stopping your IV nutrition.
We also had a set back over last weekend because you became swollen again. Mommy was very upset and the doctors ended up putting you back on the medicine that makes get rid of extra fluid. You look much better this week! You always look so handsome but much better today!
2 days ago you had some wonderful nurses who made it possible for us to hold you again. This was your daddy's first time to hold you and my second! It was wonderful! We stared into your eyes and you loved it so much! You also got moved to a big boy crib. Of course we had to decorate it with a new mobile and a mirror so you can see how handsome you are.
I promise to not take this long to write to you again! While I am always trying to be strong for you as you are strong for me it just tears me up to know that you can't be where you belong right now....at home with your family. You are an amazing little guy and a true miracle. We must be patient though and we will get what we deserve and that is each other! You deserve a family with this much love and that is what you will always have. Be strong Owen bear. WE LOVE YOU!
-Mom
