January 24, 2008 at 01:26 PM EST
Owen seemed to have a better, more peaceful day yesterday. I had to laugh when the speech lady was here. She was giving him oral stimulation in his mouth- massaging his tongue and gums. He wouldn't wake up for anything. He slept through it all. She tried unwrapping him and rubbing his head. She stroked his cheek and tickled his toes. He was totally sacked out. Who knew he would show stubborn characteristics so soon. The cardiologists discussed with us yesterday that they are thinking the surgeons want Owen to grow more before surgery. We were quite shocked to find out that the goal is eight pounds and they estimate that will take around two months. I have decided to request a leave of absence from my job and Scott will return to work shortly. Needless to say we are worried about our finances, but are prayerful about our choices. I am not ready to be alone here and was pretty upset about it yesterday, though I know that we have to be realistic. Scott feels this is the best thing for him to do right now for our family. Please be praying for us as it will be very hard to be separated. It will be difficult for me to deal with everything alone here. Owen will have blood taken shortly for more genetic testing. It will be sent to University of Minnesota within 24 hours. Later today, we will talk to the Occupational Therapist about some splints for his arms. In the morning, I think the speech person is going to do some video test to check his swallowing process. Wow- I didn't even know such a thing existed. Please continue to send the messages. It helps to hear from everybody and know everyone is out there praying for us. Feel free to send cards to the Ronald McDonald House, too. Here is the information- 350 Erkenbrecher Ave
Cincinnati, OH 45229 Thanks everybody, Shan
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12  January 28, 2008 at 06:21 PM EST
Owen did not have a gain last night, but he didn't lose either. After reviewing the chest x-ray that was taken yesterday, the doctors discovered that his feeding tube wasn't low enough in his stomach. They thought this was causing some of the irritation and making the reflux worse. So last night the nurse removed the tape on the feeding tube and pushed it down more. His poor little face is irritated and red where they have taped and retaped his smooth skin. Owen is still struggling during feedings and spitting up. The nurse suggested propping him up in his boppy pillow for the 3 pm feeding. When I went to put him in the pillow, he just started slipping and sliding. I had to stuff several blankets around him to hold him in place. Though, he seemed to tolerate the feeding better this time. We'll see how it goes at 9. Mom arrived here safely this afternoon. I'm so glad that she is here. Owen had another chest x-ray this morning to check the location of the feeding tube. Please pray for peace of mind and patience for me as I learn how to best care for my son. His breathing is more rapid and eating is more of a chore. Hopefully, his medicines will start working soon and he'll continue to pudge up. Mom and I are going to go enjoy enchilada casserole. Blessings to all of you, my friends- Shan :)
13  January 29, 2008 at 04:16 PM EST
Good Afternoon from Cincinnati! Owen is five pounds and fourteen ounces as of last night. That is a small loss for him. The drs. decided during rounds this morning that they would increase the calories in his formula. So now he is taking formula that is 28 calories per ounce. In comparison, regular baby formula is 20 calories per ounce. As of Monday, he is now taking 55 mls at each feeding- which is nearly 2 ounces. It's been slow going- with his labored breathing, he struggles with the last 10 or so mls. He's continued to vomit today. So far, the 12 and 3 feedings have been successful without revisiting any formula that's gone down the tube. The boppy pillow works wonderful to help cradle him and keep him upright during feedings. Using about three extra blankets, I can make him pretty snug as a bug. He seems really comfortable in this position. I got a load of Owie's clothes washed today- it's nice they have a place at the hospital to do it and it's free. That's convenient- especially with all the outfits he's gone through in the last few days. We're giving him gas drops several times a day and that seems to help, too. His poor little tum-tum is so robust after each feeding. His oxygen saturation is staying within the limits today and we're not hearing as much beeping from the monitors. As he gets closer to surgery, they will decrease the lower limit of his oxygen saturation. At this point, he's at a 74 and 70 is the lowest that they will go before surgery. They will not lower the bottom number until he drops his oxygen saturation below 74 and is staying there for ten to fifteen minutes without coming back up. Two OTs came in this morning to help during his feeding. They are working on feeding him the 5 mls again. Owie would not rouse in the least. Just like last time, she rubbed his cheeks and massaged his gums. He was totally in slumberville. After rounds, one of the cardiologists came in to listen to the O man and this woke him up. Then the OTs came back and worked with him. He took the 5 mls in less than a minute. The splints are continuing to help Owen with his range of motion. I'm so proud of my boy. His left fingers are much, much, much less cramped. He will fan his fingers out now and let me massage his palm. While we were in Dayton, he cried if you just touched this hand- so this is tremendous progress for him. Now, while he is sleeping, he keeps his fingers open. It's funny because he wants to overlap his two fingers on the ends over the other two fingers. The OTs are very happy with his progress as well. Right now Owen is listening to his classical music and chilling. Nothing like a full tummy and some soothing music to relax you to sleep. Thank you so much for the continuous postings. My gratitude is overflowing from my heart. I like to glance back over them after a hard day. It's very encouraging to know that we have so many people supporting us. Please continue to pray for all of us. Pray that Owie would tolerate his new increased-calorie formula. Pray that we can manage his reflux adequately. Pray for the many doctors and nurses that are caring for Owie on a daily basis. Please pray that I would have restful sleep. I want to be alert and aware of what I am doing for Owie during the day. Pray for Scotty as he is back in Boonville alone. Pray that he would also sleep well and remain energetic for his jobs. Please pray for our finances. Owen is a miracle and I'm looking forward to the day when each of you gets to meet him. Thank you again for your friendship and support. I thank God for each of you. God bless you all- Shan :)
Baby Owen Continued