We had Smiley Boy's one year portraits done today. He definitely lived up to his name. I've never seen him have so much fun. The photographer did a great job with him too. We've taken so many pictures of him--and it's gotten worse since we got a digital camera--but I decided it was time to get an "official" picture, so now we have one, or I should say several.
I stood by his crib and counted his breaths last night for the first time in a while. 22 per minute. That is no small miracle. When we brought him home, he was breathing 80 times per minute. I can't even imagine that now, but over nine months he's been home, his lungs have outgrown the damage from the ventilator, and his breathing has become more and more normal. God's hand again--or still.
His breathing rate caused me to be "not-so-nice" to a nurse in the pediatric ward in July. Smiley Boy had a double inguinal hernia that required surgery as soon as he was big enough. He cried constantly the first month he was home, but the doctor wanted to wait until he weighed ten pounds to do the surgery, and besides, according to him, the hernia didn't hurt. Well, many people we told that to laughed at it and said they had seen grown men cry with them, but we also had people tell us of people who had had them who said they didn't hurt. At any rate, after the surgery, SB was a different child; I think he had been in pain before.... Anyway, the doctor agreed to do the surgery early when we persuaded him that that was the only solution to the on-going crying.
Somehow, when the triage nurse took his vitals when we checked in, she wrote his breathing rate down as 40 instead of 80 (maybe she counted thirty seconds and forgot to double it, I don't know). Now SB had never breathed 40 a day in his life, and she just made an honest mistake. Well, Nurse Sue came in later in the afternoon after the surgery and, to make a long story short, insisted that he needed to be put on morphine for pain because his breathing rate was so high. She would not believe that the nurse earlier had made an error and that 80 was normal for him, and she really worked to put me on a guilt-trip--I think it's just as well that I cannot now remember all the mean things she said, but she was very pushy and wouldn't listen to anything I said.
And boy, I could have said a lot of things; I could have described the hours in the previous five months that I had spent learning about and analyzing Smiley Boy's breathing, and the hundreds of times (just since he came home in June) that I had counted his breaths. I could have gone on to explain just exactly the road we had been on since February and that she didn't have any idea what she was talking about. However, I was extremely polite in my refusal of the morphine, and once she left the room, Drason went to find Smiley Boy's nurse (Nurse Sue wasn't even our nurse) and I asked that Nurse Sue not be allowed to come back into our room.
After our wonderful experience with the staff in the NICU, neither of us was prepared for all of that. The rest of that surgery experience was interesting as well, but I hear a little boy awake from a nap, so I'll save it for another time.
Friday, March 23, 2007
Wednesday, February 28, 2007
Wow
I can't believe it has been a year already. I just have to sum it up here, and then I think I'm ready to move on. I've spent a lot of time remembering the events of last February, including the outpouring of love from friends and family. Three of my sisters actually made the drive (seven hours and four hours) to see us in the hospital, and one of them tried really hard to make it for Smiley Boy's actual birth, but she didn't make it because the time was moved an hour earlier.
The two weeks prior to The Big Day were crazy. I didn't really understand what was happening to my body--it seemed like if my blood pressure was up I should be exercising, not lying around with my feet propped up. I was assured by medical professionals that I trust that I did indeed need to be still. The prospect of bed rest brought all sorts of notions about getting lots of reading done and possibly some scrapbooking. I didn't count on two things though: I was too out of it with the mag sulfate to see to do anything constructive, and the bedrest turned out to be a relatively short two weeks.
The time was filled with morning routines of labs (having my blood drawn about 5:30 each day), being weighed, putting the baby on a monitor, breakfast, and a nap. Visitors usually came in the afternoon, and the doctor in the evening. He would frequently hook us up to the ultrasound machine and check on Smiley Boy. I was actually off the mag sulfate for about a week, and that was really nice. Once I was back on it though, I slept a lot. My father-in-law brought me his laptop so I was able to do some e-mailing, and my beloved called each evening and spent the weekends sleeping on that amazingly uncomfortable chair that unfolds into a bed. There is a part of my mind that knows that this was a very difficult time, but at the same time, I know that I was buoyed up by my heavenly Father, and He made it all completely bearable.
It never occurred to me during this entire time that I might lose this baby. God had filled me with a supernatural peace, and I was able to walk in that throughout. I actually learned a huge lesson about faith. I thought in the beginning that if I just had enough faith, God would heal me, and I would carry this baby full term. After just a few days though, He revealed to me that faith was about trust. I didn't need to trust Him to do a specific thing. I just needed to trust Him. Once I got to this place and realized that I didn't have to work up enough faith to make everything turn out right, I could just rest in Him and trust Him to work things out His way and that His way would be the right way for Smiley Boy, for Drason, and for me.
His way turned out to be a c-section at 26 weeks and a one pound seven ounce, twelve and a half inch long baby that spent almost ten weeks on a ventilator and who didn't come home until a week after his due date. His way turned out to be a g-tube in Smiley Boy's stomach because due to the time he spent on the vent, he had feeding issues and would not take a bottle....
His way also included no brain damage, no eye problems, no hearing problems, and a sweet-natured smiley little boy who is quickly catching up to his peers in development and size. We are so blessed. I bet I've said that a thousand times in the last year. I don't know why God chose us for this adventure, but we thank Him every step of the way that He is with us and carries us through the rough parts.
Happy Birthday, my precious Smiley Boy!
The two weeks prior to The Big Day were crazy. I didn't really understand what was happening to my body--it seemed like if my blood pressure was up I should be exercising, not lying around with my feet propped up. I was assured by medical professionals that I trust that I did indeed need to be still. The prospect of bed rest brought all sorts of notions about getting lots of reading done and possibly some scrapbooking. I didn't count on two things though: I was too out of it with the mag sulfate to see to do anything constructive, and the bedrest turned out to be a relatively short two weeks.
The time was filled with morning routines of labs (having my blood drawn about 5:30 each day), being weighed, putting the baby on a monitor, breakfast, and a nap. Visitors usually came in the afternoon, and the doctor in the evening. He would frequently hook us up to the ultrasound machine and check on Smiley Boy. I was actually off the mag sulfate for about a week, and that was really nice. Once I was back on it though, I slept a lot. My father-in-law brought me his laptop so I was able to do some e-mailing, and my beloved called each evening and spent the weekends sleeping on that amazingly uncomfortable chair that unfolds into a bed. There is a part of my mind that knows that this was a very difficult time, but at the same time, I know that I was buoyed up by my heavenly Father, and He made it all completely bearable.
It never occurred to me during this entire time that I might lose this baby. God had filled me with a supernatural peace, and I was able to walk in that throughout. I actually learned a huge lesson about faith. I thought in the beginning that if I just had enough faith, God would heal me, and I would carry this baby full term. After just a few days though, He revealed to me that faith was about trust. I didn't need to trust Him to do a specific thing. I just needed to trust Him. Once I got to this place and realized that I didn't have to work up enough faith to make everything turn out right, I could just rest in Him and trust Him to work things out His way and that His way would be the right way for Smiley Boy, for Drason, and for me.
His way turned out to be a c-section at 26 weeks and a one pound seven ounce, twelve and a half inch long baby that spent almost ten weeks on a ventilator and who didn't come home until a week after his due date. His way turned out to be a g-tube in Smiley Boy's stomach because due to the time he spent on the vent, he had feeding issues and would not take a bottle....
His way also included no brain damage, no eye problems, no hearing problems, and a sweet-natured smiley little boy who is quickly catching up to his peers in development and size. We are so blessed. I bet I've said that a thousand times in the last year. I don't know why God chose us for this adventure, but we thank Him every step of the way that He is with us and carries us through the rough parts.
Happy Birthday, my precious Smiley Boy!
Tuesday, February 27, 2007
Tip-Toe
My niece (actually my grand-niece, my niece's daughter) might come stay with us this summer. I am thrilled. She'll be nine years old by that time, and she is my sweetheart. She wants to get a kitten while she's here, but I'm not sure how my monster feline would take to that. He kind of enjoys being an "only." Frankly, I was afraid he would be mad about Smiley Boy, but he took him right in stride, as if he'd been here all along.
His name is Tip-toe, and he's an enormous black cat with a white chin and white toes. He's pretty lazy for the most part, but he will occasionally bring me a bird or small rodent (usually alive), so I know he's getting some exercise. He has mellowed quite a bit as he's gotten older (he's 11). When I got him, I had two other cats, and he wasn't crazy about either of them. They have now gone to kitty heaven though, and he's in kitty heaven being here by himself. So, we'll just have to see about a new kitten. My sweet girl has never had one of her own, so there's a fair chance that I will give in.
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