Hello Abby again. Last week I had a team meeting with Ellie's doctors, nurse and everyone else that is involved in her care to hammer out a plan for her future treatment. So the plan is to schedule a temporary ostomy surgery for the 20th of October. During the three weeks between now and then we are going to try to increase the amount of milk that she can tolerate. If she does well with these increases we will cancel the surgery and go home. We will continue increasing as much as she will let us at home. So every two to three days if she is still doing well, we increase her milk by one ml. Today she increased to 8 ml and we are hoping for the best.
But there is a little part of me that knows that this will not work. I feel like I have a pretty good feel for the status of her intestines. They are very dilated and have never been give the opportunity to come down in size. We stayed at 2 ml an hour for about three weeks in the beginning of August and we did see some decrease in dilation. Because her bowels are so dilated she can't move as much food through as she needs to. We have tried pushing the feeds before and we have always gotten to a certain point and all the sudden she starts getting sick and is miserable.
So if she doesn't do well with her feeds then we in for a temporary ostomy. What is a temporary ostomy? A temporary ostomy is something the surgeon will create by opening Ellie up, finding the anastomosis (where her small intestine was attached to her large intestine) and cutting the connection between the two. Then he will bring the end of the small intestine up to the surface of her body and attach it there. So, any food that she eats will go in her mouth/G-tube through her stomach, small intestine and then out the ostomy and into a plastic bag that is attached to the outside of her body.
What happens to her large intestine you may ask? Well the surgeon is planning on leaving the small and large intestine slightly attached so that some food will go out the ostomy and some will go down the large intestine. This is very important because the large intestine is responsible for water absorption so if her large intestine was completely bypassed she would have really bad hydration issues and the large intestine could get very small due to lack of use (micro colon). We may even have to do some thing called “re feeding” that is where we take food that has come out of her small intestine into the collection bag and re inject it into her small intestine.
What are the risks of this surgery? First, because Ellie only has 31 cm of small intestine the food that she eats will fly right though her along with the gastric juices that her stomach makes. Some of this fluid will either be re fed into the large intestine by us and some will go thought the small area that is still attached to the large intestine. But. the majority of the fluids will end up the collection bag. So we will have a lot of work during the month after her surgery trying to keep her electrolytes balanced and her hydrated.
Second, the collection bags are not perfect and sometimes no matter what you do they leak, especially when you have a very active baby. When the bag leaks the milk and stomach juices will come in contact with Ellie's skin and can cause nasty ulcers on her skin. So this will be something that we have to be very aware of and work very hard to avoid as much as possible.
Third, this means at least 6 more weeks here in the hospital. It will take that long, and probably longer, to learn how to manage the two previous risks.
Fourth, because some of the intestine will come in contact with the outside air and could be damaged, she may lose around 2-3 cm of bowel. That is a lot when you only have 31 cm to start with.
Lastly, there is no guarantee that this will work. Ellie's intestinal damage happened when she was about 4 months in to her development, so that means by the time she was born she had been living with this issue for 5 months. Now she is almost 6 months old so that means that her intestines have been dilated for about 11 months. There is a chance that it has been too long and the damage is irreversible.
So, those are the risks. Yes it is going to be hard work, but neither Gib or I have ever backed away from anything because it was going to be hard. Yes, we may lose our minds constantly replacing collection bags that keep falling off or that Ellie learns how to take off. But, we will manage and no one will watch her more closely than us and we will do everything we can to keep her skin as healthy as possible. Babies get ostomies all the time. Yes, she will lose some precious cm of bowel, but we would rather have 28 cm of functioning bowel then 31 cm of non functioning bowel. Lastly, there is no guarantee that this will work, but there has never been a guarantee for any of the things we have done with Ellie. And there is never a guarantee in medicine.
Yes, it is going to be hard on us and more importantly is going to be hard on Ellie. But all in all Gib, myself and Ellie's surgeon believe that this is her best chance we can give her intestines.
Because we have to look at the glass as half full, we are still trying to push feeds and I pray that Ellie proves me wrong and we end up canceling her surgery date. So for now we spend our days with Gib working and Ellie and I hanging out laughing at each other. And on the weekends Gib and Ellie spend their days snuggling and learning how to jump really high. The house looks great and is starting to feel more and more like home.