My mind is an emotional roller coaster. I am trying to piece together the thoughts and feelings, but nothing seems to make sense. The littlest doubts have become these huge mountains. Satan is working on me and I hate it. Every little thing I have let him get to me. I have been struggling in my faith. It is so easy to say, give it to God, but it is so hard to apply. In plain terms, often times I suck at faith...but it is not from failure of trying.
The past couple of weeks it has been this focus to get the tube out and for Lydia to gain weight. However, the past couple of days have been just trying to make sense of everything and put all of the pieces together. It is amazing how one little thing can shift everything. One phone call, one sentence, one little word at times can change everything.
The appointment overall went well. It was very long. We were in the doctor's office for about three hours. The doctor did listen to a point. When we discussed getting the tube out, he was not in favor for it. Basically because of her weight gain. We agree with him, however, most of the information he gave us was different than what we had researched. Not sure where the differences come from, but I am glad we did the research and could have a conversation about those differences. It is so important to be informed and really stick to that "gut" feeling.
So the most pressing issue was weight. I am totally confident that with me stopping breastfeeding and her taking the fortified milk, she will do just fine. I can also add in more calories. I stopped because our dietitian just told me we had to get to a certain number of calories, obviously that was not enough. He did add in one more thing. I think this just blew me away. He told me that he thought maybe waiting until she was 9 to get the tube out was a good thing. WAIT, what did you just say?
Needless to say, Eric and I both thought that was unreasonable. The reason is because there is a chance that she may develop a condition that she will not be able to protect her airway when she becomes older. Also, he said that the J tube surgery is complicated. So we would have to check with our surgeon to see what he said. When I had talked to him earlier, it did not seem like a big deal. However, he did not know about the weight gain. But if she is gaining weigh well, I would not see a reason not to take it out.
Other than being totally blind sided by this information, I cannot find any information about this "condition" the GI doctor was talking about. I have several e-mails out to different people and some of the groups that I belong to. I am searching to find information out on this. I will contact his office on Monday to have him send me information on this. It is really frustrating to just be finding out about this. We have done so much research and to think that we missed something this big is very upsetting. Also, for no one to mention it until now, is very upsetting. So, before I let myself get too out of control, I will have him send me some information on it and wait for the returned e-mails.
I also asked him to change out her tube. Her tube seemed to be sitting in there very odd. He switched her back to the small tube and it is awesome. Today, for the first time, she just went on her stomach. How awesome that was to see her. She is getting herself into the four point position ready to crawl. It is such a HUGE step for her. She just blows me away. I am very glad that I stood up for what I thought was right for her. I may not always be right, but I do have her very best interest in mind. No matter how hard it gets, I will stand up for her.
We also switched dietitians. I found it unacceptable that our other dietitian did not return calls and she was not on top of some of these things that are issues now. So we are still waiting a phone call from her. Because the appointment ran so long we were not able to meet her. I have been praying that this will be a better fit and this will be a great resource for us and not a huge stressor.
Overall, everything went pretty well. We did not get the news that we want, but we were able to get answers. God gave us what we needed. We thought one thing, and God knew another. I think that we accepted it very well. We decided at this point that we would not be switching GI doctors as ours knows her and did a good job of listening. But, if we have another communication breakdown or issues, he knows that we will be getting a new doctor.
I have to say that I have struggled with that appointment for other reasons. Satan has really been working on me. The doctor always gives a grim picture. He says that she probably will not be able to take in the calories that she needs so she will have to go back on the tube. Kids like these usually develop other problems. Instead of focusing on what she can do, her potential, they always have to focus on the negative things. It sometimes is more than I can handle.
I have to honestly say that there have been several times that I have thought in the past days to just put her back on the tube and accept defeat. I have thought several times that this is more than I can handle. And to be honest, I have even thought is this worth it. I just cannot get over the fact of how the doctors treat these patients and families. There is often time little hope. Instead of getting my hope from God, I have been placing it in things. Hoping in this or that. I know better than that, however, it has been hard to apply it. I wish that you could go into an appointment and the providers to be as happy as you are about her accomplishments. To believe in her the way I do. To see all of the ability there. To recognize her as a person, as Lydia. I guess that is why she was given to me and not to someone else. God knew that I would go to the ends of the earth for her, that I would love her unconditionally, that I would believe in her even when no one else would (her father does too...he is pretty wonderful).
Some times it hurts so bad to have to mention these thoughts and feelings. But I need to recognize them and confess them as sin and move on. But I want others to know that these are real, raw feelings. That it is tough. There are days that are so difficult and you just are not sure what to do. The lows are so low and the highs are so high.
I don't think that it helped that she was very sick either. She has constantly been throwing up and having loose stools. She has been eating a lot less calories. We had to stop fortifying everything just in case she was not tolerating it. So not only do we have to be focused on her gaining weight but now she is not eating calories, she is losing everything. Stressful. However, I tried to remind myself that she is a baby that is sick. She will get over this and things will be good. Bathing in poop and vomit is never fun. The other girls were sick too. But not knowing exactly what it is, was frustrating. Was she not tolerating the fortification or was she just sick?
Today she finally started to turn it around. She actually wanted food and anticipated it. She only threw up once and I think that was because she ate too much at once. Her stools are back to normal. Tomorrow we may start at half fortification and she how she does. Or we may just go one more day to get her back on track.
I forget that she has these bumps and then seems to just fly right over them. Not only does she seem to have her appetite back, but she is now loving tummy time. She just amazes me. I know God has a plan, but it is really hard to continue to trust when there is one thing after the next. I just pray for a break sometimes. But, I look back to all the many blessings and just try to be content in that. God is teaching us, God is growing us, God is using us, and I just have to be patient with His plan. Harder to apply, but so worth it.
We were on the radio again for the Ronald McDonald's House. It was another good opportunity to be able to promote such a wonderful organization. I also was taped for the new Epic training for the Children's Hospital. After Lydia was given breast milk on two different occasions, it was very important to us to have them change their process. After talking to some people and sharing our vision, it is becoming reality. It is because of Lydia. She is making an impact to all kinds of people. When people say she is not worth anything, I just laugh. She has brought more good in this world that I ever have. Yet many people value my life more than me. We have it backwards. I am learning from her, and I think many are. Yet we want to label and brush "her kind" off. HUGE mistake. Huge mistake. She is no different than you or me, she just sees the world in a different lens and reacts that way. And we can just sit back and learn.
My mind is still just a jumbled mess. God is working on me. I can feel it. It's funny because we have been in this place before. Focused and consumed on one thing, but forgetting what He calls us to do. In this journey there will be more times that we will be here, I am praying that next time I will learn. His greatness is so great. His love is so amazing. His mercy and grace is such a gift. Yet there are times that I just forget about it. There are times when I just want to push Him out of the way and drive myself.
I would ask you to pray for Lydia that she continues to feel better, that she can tolerate her fortification, and that she gains weight. I would ask you to pray for me that I can continue to learn and be in God's grace all of the time. That I can just appreciate each and every one of His blessings He has already given to me. That I can be His child, doing what He has asked me to do.
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