Guess what we have been doing...playing! Sweet bear, you have been doing a lot more over the last 2 weeks. We have been working with you to strengthen your muscles. The two of us got down on the play mat today and you laid on your back and reached for all of the toys. This is amazing! You are strong and it is amazing that a little guy who wasn't able to move for two-and-a-half months of his life can do all of the things you can do. Grabbing for toys, kicking your legs, and this morning your nurse said you were on your belly trying to look around and almost turned over. Turning will be the next thing we work on. I will also try to see if you can tolerate sitting in your bumbo seat.
Your dad is halfway across the country now with the dogs. The last I checked he was in Idaho, but trying to make it to Portland by tonight. I am doing well here with you. Just trying to keep motivated to get us back to your daddy. Unfortunately mommy's health insurance denied paying to transport you by plane to Portland, but we are trying another route that will hopefully be more promising. Fingers crossed! I am optimisitic.
Moving day! Not for us but for your dad and brothers. They made it out with U-haul trailer in tow. Our house in Columbia is now cleared out and I will spend my first night with the Robinsons. I can't believe your daddy and I got everything packed with the help of your Grammy :)
You have been busy! Today you sat in your bouncy seat and then fell asleep. We decided to wake you up and play with you. Your physical therapist, 2 child life friends and I got you out of your crib and put you down on a floor mat and played for about 30 minutes and you loved it! You tolerated a diaper change in the middle. I think your favorite part was me sitting you up so you could turn your head around and look at all of your lady friends who came over to play. You smiled and laughed so hard. I think you had so much fun because we didn't even make you wear clothes... Silly Goose!
As always I absolutely hate leaving your bedside but I had the most wonderful day with you to make up for your daddy being gone :) hopefully not too much longer and you will be staring out the window in Portland and working on getting home.
Well Owen bear, your Grammy came to visit all the way from Oklahoma. Mainly to visit you but also to help your mommy and daddy pack so we can get your dad moved out in 3 days. The night she got here you gave her such a special treat. She got to hold you for the first time! After 4 months of patient waiting she got to hold you while you were smiling, cooing, laughing and kicking your big feet. What a treat! She absolutely loved it. Take a look.
-Mom
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
This is just a quick update... But we have had some hard days and some good days over the last week. You have gone up a little on your oxygen but your blood gases have been good. We think you might be teething because you had been irritable and very difficult to console. So of course since you are so fragile and you are in the NICU we did a few labs, an x-ray and an ultrasound of your chest just making sure to rule out anything bad that could be going on and that was all normal (well... Normal for you) You keep putting your whole hand in your mouth to suck on it and you have been loving your pacifier! We did increase the powdered formula that we put in your skimmed breast milk to increase the calories your are getting to make you nice and big but I think this might be causing you to spot up a few more times ??? We will see over the next few days. It pains your mommy but we really can't rely on plans. I love you so much and need to remember that you will get better just at your own pace. Most of the goals we had on my last blog are on temporary hold as we help you get past these last few tough days, but as always I promise to get you hone and make it up to you. I told all of the nurses that I want you spoiled by the time you come home and they are making their best efforts!
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