I just wanted to tell you to keep your chin up and I wanted to remind myself. What a journey. I really need to do a better job of keeping you up-to-date! I figure that I'm always holding you and talking to you, but I need to write it here so that you will remember when you are all grown up.
Well, you are still on CPAP oxygen through your nose (still off the ventilator!), and you still require a lot of nitric for your pulmonary hypertension. Not a whole lot of change since a month and a half ago when we got you off the vent. But wait...chin up! You are still off the vent :) I love you!
This week you need a little less oxygen when you are calm and happy. One thing that has been irritating you is a lot more spit-ups. The nurses and I all think all that acid coming up from your stomach is hurting you and you cry. So, what does mommy do but pester the doctors to try another medicine and ask the GI docs to come see you. What any mom would do I'm sure. I also think that all of those yucky medicines are upsetting your tummy. We will get it figured out.
Last week you were really fussy and we think its because you developed this swelling on the floor of your mouth right under your tongue that is probably a swollen/plugged salivary gland. I know, one more thing to add to the list of things that just won't leave you alone. So we gave you these lemon swabs which made your mouth water and unplugged the duct...and voilà...it was gone!
On a much happier note, you have been smiling a lot. Laughing. Cooing. And moving all around. You took some milk from a pacifier trainer that we rigged with a tube through your passy hooked to a syringe with milk so we can control how much liquid you get. You took a whole 2 teaspoons! And for those who take these things for granted this is a huge accomplishment that you can even tolerate a pacifier, much less liquid going through it. Most babies lose this skill when they are intubated for 2 and 1/2 months of their lives. GOOD JOB!
Other developments: Your daddy has been working hard in the ER here until he moves to Portland in 1 week to start his new job in the ER there. I can't tell you how much we are going to miss him. I have been working extra hard and I know you have to try to get us reunited. Several people at the hospital are trying to transport you there but of course it will take a while to get all of that organized. In the meantime I have another 5 days left of my residency and have been working extra hard to finish it so I can devote 100% of my attention to you. I will be staying with Uncle Spencer, Aunt Lauren, Parker and Jack until we can fly to be with your dad in Portland.
Sweet Owen - I wish I could read this now with all of the entries for the next 5 years. I wish I could see into the future. But I can't---I can only imagine and hope. And hope I will! My heart hurts when each day I wonder how long you will be in the state you are now. How long will it be until I get to walk through those doors with my prize? You my dear! I want you to know that my tears are not for defeat but for hope and concern to make sure that I am doing everything I can to help you to heal and grow. This disease is relentless, but you have come so far. We have come so far. And I promise to show you true happiness in our lives together. Each day just seeing you and a smile when I get one gets me to the next day. I love you my Owen bear!
-Mom
.JPG)
.JPG)
.JPG)
.JPG)
