I realize I left everyone hanging not updating since our hospital visit. Baby GL came home as expected on the Friday before Labor Day weekend. He gained some weight during his stay which seemed to satisfy the doctors. I still feel that the hospital stay was unnecessary. There were other ways to accomplish what they needed without sticking my son is a small hospital room with no where go to go. Had they thought it through and known about the MRSA situation I can only hope they wouldn't have done that to him. Now we have to go through another round of three negative results to not be put in isolation if every there is another hospital visit. We thought we had two negatives but then he ended up positive this last time around. Just the icing on the cake, I guess.
Once Baby GL was home he seemed to adjust back to his schedule. We are still experiencing daily vomiting fits. Something we are experimenting with is taking him off the viagra meds we started for his heart a few weeks back. I'm wondering if that adds some sensitivity to his stomach. Baby GL will vomit just seeing that spoon coming near him. I really don't think that's a natural reaction. The goal coming out of the hospital was to get Baby GL to eat 5 jars of food or yogurt with a teaspoon of oil added to each, 16 ounces of Compleat Pediatric, as well as 4 ounces of whole milk. So far we've only been successful with 3 jars of food or yogurt and maybe the full amount of liquids. He's just so small you hate to stuff him because it will just come right back up. It's a constant struggle.
On the contrary to Baby GL's weigh issues, his energy is as excitable as can be. He resists naps, he jumps and crawls around at any given moment and will not sit still at any point during the day. Even when he sleeps he manages to roll around do much he wraps the oxygen cord around him so many times it comes off the oxygen tank. I've woken up to the whooshing sound coming from the tank after he's pulled it off. Usually that would be a sign that it's time to come off the oxygen. The doctors don't seem to see it that way. They actually thought adding one more cord, a feeding pump, was a great decision. Sure, why not. Let's never get sleep because we'll be up all night unwrapping our son.
I still have a lot of hostility towards the doctors after this last hospital stay. The doctors diagnosed Baby Gl as "failure to thrive". I've heard other babies being diagnosed as such. However, when you hear that about your own child you start to question everything. Most of the time I just think about how that should really be called something else. If my son was "failing to thrive" why would he be crawling around, giggling, walking, rolling, talking, etc. That to me is the definition of thriving. He's alive, he's healthy and very happy. Yes, he's small. So let's plan the diet and stop defining it.
Aside from all the crazy stuff we've actually found a lot of great times this week. I took Baby GL's little baby pool out for him to play in. He loves to play in the bath now, splashing around, standing up against the edge of the tub then sitting, then up again. I figured the pool would be just as great. It was fun, but not the same effect. We've been trying to play more with Baby GL's cousins and to take him around other people. He's been experiencing a lot of separation anxiety. It's not good when he doesn't even recognize his own grandparents.
It's been another week of adjustments, to say the least. We've begun t realize that this is how our life will continue. I have no fears that Baby L won't catch up as he gets older. The comical thing is that my 2 month old nephew wears the same size clothing as Baby GL, who is now 18 months old. Well, so many parents wish their babies would stay babies longer. I guess we get to experience that in real life.
We are expecting to stay one more night in the hospital. It's been a frustrating battle with the doctors and nutritionist. They want to give Baby GL an over abundance of extra calories to bump his growth. For a child as active as him, it does make sense. However, since we've been stuck in a small hospital room, Baby GL has had no interest to drink from a bottle. Really getting him to take anything has been terribly difficult because he just can't be the same active child when there's no room to play. The MRSA swab he had done ended up positive, which just means we have to start again to get the 3 negative swabs before he would be out of isolation in the even he would be hospitalized again. The good news is that they plan to let us come home tomorrow.
Baby GL's new diet will now consist of 5 solid baby food feedings with one tsp of oil added to the baby food to boost calories. We then will keep the 2 cans of Compleat Nutrition and 4 ounces of whole milk. It's a challenge to be on this diet in the hospital. It's just unrealistic in this setting. I think that if they really wanted an accurate judgement of how he uses his calories and how much he can tolerate they should've had a nurse come to our home for observation. We had a home nurse when Baby GL first came home. I'm sure it was possible to do. The only thing was that they wanted lab work done to see the function of the kidneys, liver, etc. to make sure the diet wasn't harming his body. It really is a high calorie count for the average child.
I could be one of those very optimistic parents and say how wonderful it has been learning about my son's body and feeding habits. however, it's difficult to be optimistic when you have to take your son out of his home, away from what he's used to, and start poking at him every couple hours. Since Baby GL was born I have learned a tremendous amount about how to give him the best care and how to read his signs. I consider myself the expert being his mother. I just don't understand why doctors can't trust us moms when we tell them something will not work for our children. I'm lucky we got the diet we did. The nurse was suggesting we tube feed while he sits in a high chair. Is there a 17 month old child out there that sits still in his high chair? Not my son. She also suggested having Baby GL wear a backpack with a pump to pump formula in through his tube. The same pump we used when he was much younger. The pump backpack is half his size. There is no possible was he would continue a normal life with that. I really don't know how these people can make recommendations until they actually experience the care needed 24 hours a day. Taking care and following the directions given from the doctor on patients for maybe an 8 hour shift is completely different from the care you give your own child. It's just a frustrating scenario.
Once again, the good news is that tomorrow our lives will go back to normal and we can get out baby home. That is really where he needs to be.
