It's been a very emotional couple weeks for me as a mother. I can say that at a moment when you feel like everything is on the upswing, everything can change in a quick moment. Baby GL is doing great, no worries there. We did have a couple clinic visits last week that created a lot of stress, so much so that I actually got a spring cold that I'm still trying to recover from.
Our first clinic was the eye clinic. Last time we visited was when the doctor cleared Baby GL for ROP, meaning no need for laser eye surgery. That alone was great news. This visit was actually quite promising, also. The doctor confirmed that Baby GL will probably need glasses. However, she won't need to see him now for a year. Between ENT and the eye clinic, that's 2 less clinics we have to put on calendar for now. Our next clinic visit was a whole another story.
We had our routine visit to GI, Gastroenterology. I usually feel pretty stressed at these appointments, but this time it just broke me down completely. First we spoke to the Nutritionist. She said Baby GL is gaining weight, average 12 grams a day, but it's not quite as much as they would like to see. She asked me questions about his feedings and as I explained our routine she just gave me this look of disappointment. Why didn't I have a better schedule? Why wasn't I fattening him up with proper amounts of vegetable oil? What a terrible mother! That wasn't even compared to the way the doctor made me feel. He came in again with the look of disappointment because Baby GL is well below average on the growth chart. He wanted me to give him our daily routine broken down to the hour. How much he eats, what he eats, how he eats. He's a baby. What baby is on a routine hour by hour unless he's hospitalized. Baby GL is 13 months old. He bounces, he plays, and we feel lucky when we are able to get food into him and then follow up with a dirty diaper. Well, apparently that's not good enough.
The GI doctor is still very concerned about Baby GL aspirating on his feedings. To my understanding, after speaking with our Pulmonologist, there was no sign of residual food in his lung seen by his CT scan so we should keep feeding as we've been doing. Well, once again I am a terrible mother. The GI disagreed. He said there is no way to tell if the aspiration is doing permanent damage. So I ask what was the purpose of the CT? My understanding was that we did the CT to see if the aspiration was an issue. Again, I must be wrong. GI believes that we need to be primarily G-tube feeding Baby GL. Even consider going back to the G/J-tube that caused so many problems back in the fall. He had the audacity to talk to me about surgery on his stomach. So what do we do? Do we continue to risk damaging our son's lungs which in the future could mean a lung transplant, according to the GI? How do you tube feed a child that, when awake, is in constant movement. It's a battle. The more we tube feed the more he vomits. So that brings the idea back for the G/J-tube that feeds him directly to the intestine, bypassing the stomach completely as well as avoiding oral feeding. Baby GL is not a vegetable. He recognizes a bottle and reaches for it when he's hungry. How do you take that away from a child?
So now I struggle with the choice of what to do. How do you choose? We've been making great progress with our array of therapies and the GI doctor wants us to move backwards. Well, his treatment was to tell us that Baby GL must take in 21-24 ounces of formula a day. That is quite an increase from what we've been getting into him the last few weeks. We can't go back to overnight feeds because then he doesn't sleep. Luckily, Baby GL has been hungry lately and he'll take 12-15 ounces orally. However, is that too much orally? He doesn't sleep enough for us to tube feed more than maybe 10 ounces. His naps are not very long and he'll wake up when he feels the sensation of food entering his tummy. How do other parents do it? They manage to feed their babies when they're hungry and naturally they decide to agree to spoon feeding. Why do we have so many problems? Not all parents have swallow studies so how do they know if their children are aspirating? I guess they wait until their child gets sick.
I got angry. I decided to prove that GI wrong and get Baby GL to grow. So now I mix squash smoothies. Surprisingly, squash and sweet potato will smoothly mix with formula so that it can be given out of a bottle. It also is smooth enough to be fed through the g-tube. I am determined to give my son the nutrition he needs and get him to grow to prove to that GI that I am a good mother and we can do things without cutting my son's stomach open again. He already has 2 scars on his tummy and a third once the g-tube is removed. We'll continue to mix these "smoothies" until Baby GL agrees to feeding him by spoon. He will sit and eat the food off his toys and use the spoon himself, but it's never enough. So until he takes a spoon from us he'll get it in any other way we can give it to him. What do other parents do in this situation? Maybe these situations aren't common.
This week we saw the Cardio clinic. I had prepared myself for a cardio catheter, but I guess I misunderstood. We actually ended up meeting Pulmonary Hypertension doctor. Apparently, the cardio catheter is very invasive so it's not something they will do right now. The doctor basically explained that the echo shows signs of increased pressure due to the ASD, hole in his heart. Without the cardio catheter he can't say how much pressure is present. The pressure can actually cause Baby Gl to not grow productively so that could be one of the cause of his slowly growth. He also saw the CT scan and there definitely is evidence of scarring on his lungs. Its difficult to say if any of it is permanent. Unfortunately, he agreed that the aspirating can continue to do more damage, which I know, but we still are unclear what we should do.
His treatment is to remain on the O2 and he wants to add some meds. The meds have some side affects that could cause some issue with his surgery coming up in June. One of the side affects for boys is the possibility for erections. Well, starting in May Baby GL will be getting 2 rounds of testosterone in preparation for his surgery for his hypospadias, which is on his penis. Due to the fact that we don't want to cause our son to have a 6-week erection with all the meds stacked on top of one another we're waiting to hear back from the doctor before we would start any new meds. I know in years to come Baby GL will be yelling at me for discussing this via the web. Oh well, it's the joys of being a parent, embarrassing stories about your child.
Baby GL's most current weight is 13lbs 13oz, length was about 25.25 inches. The length is never very accurate due to each clinic doing measurements using different techniques and Baby GL being finicky about straightening his legs to get measured. Baby GL's corrected age is 10.5 months. I know he's small for his age, but I think any growth at this point is a huge accomplishment from his frail 1lb body he began with. We will continue to do what we can as parents.
No comments:
Post a Comment