This girl!

This girl!

Tuesday, August 25, 2015

The hard part is over, or is it?

The surgery is over, the dreaded days at the hospital are over too. The procedure went well and as we had anticipated, Sophia has trouble with nausea for a couple of days after. Even though I know the nausea is pretty typical for her after every surgery, it never gets easier to see her struggling with it. But we are home now and that's good. It has been overwhelming and stressful, figuring it all out from cleaning and taking care of the little wound (which is not fun for Sophia and rightly so), to working our way up to the amount of fluids that the doctor gave us trying to find the best schedule, the best position, the best amount of fluid at a time, the best rate to give it to her... It's a lot! There's a moment, after the first attempt to feed Sophia at home, I was so clumsy, Sophia was crying, I didn't have the things I needed ready and i thought I was not going to be able to do it. I wanted to cry... and I did. I am so fortunate to have a man by my side like Eric, he saw me like that and took Sophia, calmed her down and told her that her mama is going to take care of her, told her that everything is going to be ok. He gave me space to cry and calm down, and then told me that it was natural to feel that way and that it was going to get better.
 It's a learning process for us and for Sophia. She is now letting me maneuver the tube better and so the feedings are not as stressful as they were. We still have a long way to go but I hope that the healing process progresses at a reasonable pace. The little opening is still fresh and needs to be kept as dry as possible. The cleaning is painful for me to do because is obviously painful for her and I can't stand seeing her so uncomfortable, but it needs to be done. We saw our pediatrician and he said it looks ok, but he wants to prevent infection so he asked me to put some antibacterial cream on it. What makes me feel better is that there's a couple of nurses in Sophia's classroom, they have lots of experience with feeding tubes and I'm sure they have ideas on how to make this more bearable for my little girl.
The first day at home I was wondering if we did the right thing,  and I have to say that despite the struggles I think in the long run it's going to be so worth it. Now we realized how little fluid Sophia was really taking! We are definitely seeing  a lot more wet diapers and that's actually a very good thing. Also having the option of giving her bolus feedings as needed, takes the pressure off of having to push every single bite to make sure she eats the calories she needs, and now we can concentrate on the fine motor skills and independence. So with that in mind, I need to take a deep breath and deal with the healing part of this process knowing that the benefits will definitely compensate the struggles we went through to get there.
What a strong girl Sophia is!

Friday, August 14, 2015

It's not her, it's me.

So things are happening really fast. The feeding tube it's not only a fact but it's going to be placed in Sophia's belly this coming Tuesday! I only had one week to be as prepared as I can possibly be, I read the brochures they gave me, I joined a Facebook group and asked questions. I even ordered some very cute pads to put in between her belly and the g button. I also got these nice containers to store all the medical supplies they are going to give me to take care of her belly while it heals. I am also trying to prepare mentally for the few days following the surgery. They said she will be in the hospital for three days and if Sophia follows the pattern from past interventions, it could be one to two days more. I want to think that she is older so she might tolerate the surgery better and might not need oxygen when she is recovering. I am anxious about seeing her in pain, uncomfortable or frustrated and me trying to guess exactly what's wrong and not being able to calm her down.
The truth is Sophia has shown me that she is strong and resilient, and she's capable of adapting to any situation and making the best of it. I need to remember that my fears are not the same as hers. About two years ago she had her third hip surgery and she was in a full body cast for a month. I was expecting the worse four weeks, she had been moving so much lately and I thought she was going to be miserable and frustrated as she couldn't do the things she loves the most. But I was wrong! Sophia was as happy as always, she would laugh for hours just sitting there with a balloon or watching her favorites shows. Same thing happened with a test we had to do this week before the surgery, it was a swallow test where she had to drink a solution with barium and then be in different positions. I was dreading doing this test because I thought Sophia was going to be cranky for not having breakfast that morning, I also thought she was going to give us a really hard time opening her mouth for the drink and she usually doesn't like being held in a certain position for a long period of time. So there we went and I was so so wrong! Sophia had a blast! She was laughing the whole time and drank the barium when she needed to and changed positions with no problem at all. Everybody in the radiology department was in love with her and her smile.
One more example of how Sophia makes the best of everything is our trip to Pennsylvania this past weekend. It was seven hours driving each way! We thought she was going to be mad and grumpy sitting in her car seat for so long but she was, once again, as happy as she could be. Even on our way home which took longer and kept her up two hours past her bed time. She had an awesome time!

So it's not her, it's me who has all these fears and I know that it's normal for a mother to feel that way before her kid is going to have surgery but I have to recognize that Sophia being the way she is makes things so much easier. She'll probably be laughing and having fun while she is in the hospital and she'll be back to her normal routine of being the happiest person I ever know in no time.

Thursday, August 6, 2015

So a feeding tube it is.

In a matter of eight days I went from "I can't believe we have to put a little hole in my baby's belly" to "Can we get the gtube today please?!" One of the several reasons why we made the decision to get a feeding tube, is that lately Sophia is not eating like she used to and she is choking drinking her water more often. This week has been especially hard, it's as if Sophia heard about the tube and gave up eating and drinking! She opens her mouth when I offer her water but then lets everything dribble out. Eating solids is not going great either, she doesn't want to eat or sometimes I have to puree the food,which was something that we had had some progress with as I was using just the fork to smash her meals instead of the food processor.
It's so frustrating for me and I am sure it is for Sophia. When she doesn't swallow the water, or when she coughs a lot with it or when she doesn't open her mouth for the spoon or even when she does but gags on it, I worry so much and all I can think is about dehydration, kidney stones and that she is not getting enough nutrients, nutrients she needs to stay healthy and keep working on reaching her potential. I start pushing the fluid/solid into her and I feel like I am in her face all day long and that of course she doesn't like, and  very rightly so.
Same thing with her medicine, which we give her three times a day and sometimes she doesn't swallow the whole dose down. That's why I found myself several times this week wishing we were getting the tube sooner than what they told me the process will take. Now I totally understand why this is the best thing for all of us. It will make everything so much easier and we'll be able to concentrate on the motor skills without the pressure and the worry.
One thing I feel good about is that I found this Facebook group that gives support to parents of kids with feeding tubes. I "liked" it and posted a question basically asking for tips and the response was overwhelming! I got 71 messages!! I took the time to read them and to reply to them all, every one of them agree that it's scary in the beginning but it becomes second nature pretty fast, and also (and this is very good to know) all of them say that getting a tube for their kids  was the best decision they could have made. Reading those comments and words of support made me feel like I am not alone and more importantly that I can do this!
So now I can't wait for the surgery and the first few weeks after that to go by fast, so we can have one less thing to worry about.