Colin's Medical Journey...
Faith sees the invisible,
feels the intangible and achieves the impossible.
April 4, 2001:
Colin is born! My labor started about a week before Colin was born, and he was 7 days early just like Casey was. Colin was prenatally diagnosed with SMA through a CVS that I had done at about 11 weeks. It's a whole other journey telling you about the emotions that we went through when we learned that he had inherited the same SMA gene as Casey, so I won't get into it here.
So, when my labor had progressed far enough to when we knew he would be coming soon, the neonatal crew came down and stayed unobtrusively in the room for "just in case." Casey needed some "jumpstarting" when he was born. They said it was normal and all that. I've seen the same thing on The Learning Channel's "The Baby Show." Casey had apgars of 7 and 8. I believe he had points off for muscle tone and for breathing. If we only knew then what we know now, we'd know why. But that doesn't matter anyway. Colin came out screaming at 12:46 PM. My midwife gave him to me right away and nodded for the neonatologists that it was okay to leave. Colin scored 9 and 9 on his apgars with a point off each time for muscle tone.
Colin was beautiful as a newborn. I mean it! No cone head or squishy face or puffiness for him. He wasn't too interested in nursing. I was definitely worried but he did seem to want to nurse after a day or so and he did okay. Colin slept through most of our stay in the hospital. He never left my room except to be cleaned up, his circumcision and his photos. Gene was with him for those events.
Aunt Chris, Nurse Julie, and Nurse Nancy brought Casey to the hospital to see his new brother about 5 hours after he was born. I think he was amazed then, and continues to be amazed by the growing, bundle of noise we call Colin.
We went home the next afternoon. I should have stayed longer because I was exhausted and in some pretty major pain, but I wanted to be home with Casey. I didn't want to spend another night away from him.
First couple of weeks:
Colin seemed very strong to me. He always flailed his arms and legs and could lift his head pretty well. He tried really hard to lift it when he was on his belly--he almost could do it.
He was nursing a lot. So much that I was worried when he didn't seem to be gaining weight. When he was a couple of weeks old we brought his to the "sick" clinic on a Sunday. He didn't seem to be peeing and when he did it seemed very concentrated and he hadn't pooped for a few days. The doctor said he was fine. He was probably just transitioning from colostrum to regular mother's milk and it would take a bit for him to regulate. His weight was down quite a bit (I'll have to look it up exactly) but after that he thrived. His doctor suggested weekly weight checks for a while. He always gained at least 6 ounces in-between our weekly weigh-ins, so he was doing fine. After a couple of weeks I relaxed about his weight and he's been fine.
Month 2 and 3:
Colin seems like the typical baby, just floppy. I do notice "belly breathing" which is typical of SMA babies. All we do special for him so far is to make sure he is positioned so he can get to his hands! He loves sucking on his hands, and now he likes licking things, too. Our PT and OT have helped us with putting rolled up diapers under his shoulder area and also his thigh area so he is best able to move his arms and legs.
Month 4 and 5:
Colin is a great baby. He is usually happy all the time. He takes pretty predictable naps. He still nurses well. He likes to nurse a lot, especially at night.
Casey and Colin got to see DR Bach, each for the first time. Casey went first. He spent a lot of time with Casey working on ventilator settings with Lou (RT). He said Colin looked good. He said he could "definitely benefit from bipap". He said he's seen kids weaker than Casey and Colin do really well with just bipap. That's what we're hoping for. He also recommended Colin getting a g-tube sooner, rather than later. This way we could have it placed while he is still strong and not do it during a crisis, like we ended up doing with Casey. Then we could also start with some feedings with Pediatric Vivonex or Tolerex as well as breast feeding, which I would love to do forever! He said he'd send us a letter telling about the nutrition and also a letter of medical necessity for bipap, pulse/oximeter and In/Exsuffolator. That's really all he said for Colin at this time.
We tried some baby food with Colin. He's been eyeing what we eat for a while now. We've given him tiny, tiny tastes of things like Jell-O and grape juice. He tried peaches, just because I like them! He did okay, kind of wondering what to do with the food. We'll work on it.
I've started noticing that Colin is breathing harder. He is "retracting" more when he breathes, meaning he works hard and he "pulls" to take in breath. Since he's had his Pulse Oximeter for the last couple of weeks I've been monitoring him at night and do spot checks during the day. His oxygen saturation has been good--mostly 98 percent to 100 percent. Once in a while he drops to the low 90's for a second or two at night, but I think everyone does that. His heart rate is higher than normal for a baby his age. Even when he sleeps he is averaging about 130 to 160. Sometimes lower and sometimes even higher. When he nurses, his heart rate goes even higher, as it must be a lot of work for him to nurse at this point.
October 12, 2001
I looked at a naked photo of Colin from late August and one from early September and I was shocked at how he looks differently now. His chest is so small and shrunken. His arms still have pudge on them and his legs are chubby, but his trunk is so small. A month ago he was wearing size 4 diapers, but I just bought size 3s again since the 4s seemed to be swimming on him. He was also wearing 9 month clothing and even 12 month outfits just a week or two ago. Today I put one of those outfits on him and the pants slid off of his butt.
October 15, 2001
Colin had his 6 month check up today. He is 15 pounds and 11 1/2 ounces (25th percentile). He is 27 1/2 inches long (50th percentile). And his head circumference is 46cm (95th percentile). It seems as if weight is definitely an issue now. He weighs the same as he did 2 months ago. I really think he weighed more, oh, say back a month ago, but has been losing it since. His doctor recommended adding some oil, cannola, to his baby food, if he'll take it. He suggested a teaspoon, twice a day. I think I will use safflower oil instead since I know a lot of the other SMA moms use it added to formula for fat. He also suggested giving him baby food bananas or sweet potatoes since they are higher in calories.
It just so happened that Colin's Speech Language Pathologist (SLP) was coming today. She has been working on oral motor skills and feeding with Colin. We took some baby food carrots (all I had) and added 1/4 teaspoon of oil to a little bit. She is really skilled at feeding kids. She really showed me how to wait for him to get "organized" and then he'll take his tongue and get the food and work with it. He really has to work to breathe, take the food, chew it and swallow it. The swallowing seemed easier today than it had been before, so maybe I was just not getting it right. He really did well. We even gave him a second helping of carrots, but still just a bit, and added more oil.
Just made an appointment for Colin's 1st RSV shot (Synagis). At the same time he will see the new pediatric pulmonologist for the first time. Casey saw DR Lahiri once so far. He did some of his training at our hospital so he's been aware of Casey for several years, and had met him on rounds when we were spending lots of time in the hospital several years ago. He seems very compassionate and has seen a few kids with SMA type 1 and is familiar with the vent that Casey uses (LTV-900).
This morning Colin had a couple of teaspoons of bananas with 1/4 tsp. of oil. He did okay, but didn't love it.
Well, I've given up forcing the baby food. He really didn't like it and/or knows that he can't do it so it was a struggle. And, I didn't give him any more oil. A friend tipped me off that if he aspirated (which is a distinct possibility with SMA 1 and the way he's been eating) he could get a bad pneumonia.
Yesterday, he did not eat much at all. He went for 6 hours before I could get him to nurse. He would "yell" at my breast any time I put it near him. He did eat well through the night. He is still pooping 3 or 4 times a day, but not peeing enough to make me happy. Getting his g-tube next week will definitely ease my mind!
We seem to have a pretty good bipap mask with the Respironics Small Child, nasal mask #302279 using the "bonnet" #302285 that goes with it. The opening is tiny; about the size of a quarter! So far we are only using a 12/2 setting, but will go up soon. I'm hoping that while we are in NJ they will be able to advise us.
October 22 and 23: We're getting ready to go to NJ. Can't get there fast enough in my opinion. Colin is pooping some, but not peeing hardly at all. I can't get him to nurse. We tried the bottle some, but only manage to get a few ccs of breast milk, water or grape juice in him at a time.