Sitting here in the temporary morning silence, sipping my coffee and listening to Pandora, my mind is busily sorting through thoughts and trying to just release. My body aches from the stress that I keep putting on it. My fingers are steadily hitting the keys and I am trying to comprehend what I am writing. But I remember, it is not me, it is God, this is my time of release. This is where I sit back and God takes over. He allows me to be honest and just to release all of the "stuff" that has built up over time.
It has been a busy week. Lydia is sick again. We went in on Tuesday and she was put on an antibiotic as a preventative measure. With her, they would rather be very aggressive at staying ahead of the game instead of find themselves in a position to play catch up. She has been placed back on oxygen and we switched her inhalers to a nebulizer. The nebulizer she thought was pretty cool for the first couple of days, but she is pretty annoyed by them now.
She has also had lots of episodes, once again, of loose stools and vomiting. Very frustrating, especially since she weighed in at 15lbs12oz this week. WHAT? That is the total opposite direction than where we need to be at, kiddo! If things could just settle down and we could get her healthy, we may be able to get a solid week for her to eat and get a better weight. But she has been a pretty good trooper and we will be patient and continue to work with her right where she is at.
We did hear back from our new nutritionist, and she gave us some good suggestions. We were told that she is taking in enough calories...finally. However, she is deficient in calcium. So we are looking into a supplement. I pushed the idea of going back on the sodium. She is low in intake on that. She was taken off the sodium when she started losing weight. I just figured that would be an easy harmless trial. I am still waiting on word for that. But we also found out she is grossly deficient in fluids. Something that has never been brought up to us before.
I can't tell you how frustrated and angered I was when I found that out. That is something that I had asked over and over about and I was told she was getting it from her food. However, we have found out differently. Every inch of my body wanted to scream and I just really wanted to choke someone. I got over that, and just pushed forward asking more questions and trying to figure out what we had to do. She will be getting some extra water through the tube at night to meet her fluid goals. We will have to work HARD on getting her to take in the needed fluids. Of course it would help that she feels better to start trialing some of this stuff.
We had to get our pump back from the medical supply company. So the first night we went to use it, it would not work. God has an amazing sense of humor. Last night was the first night she was on the pump, so we will see what today brings!
This last frustration episode with GI confirmed that we need to switch now. It hurts so bad. One, I don't want to start over. I don't want yet another opinion. I don't want more speculation and have to retell everything again. I am fearful that we will run into the same situation as before or something worse. However, at some point this unnecessary stress needs to be eliminated. Lydia deserves to work with someone who cares for her and appreciates her. Someone who looks for her and will give her a chance. I owe that to my daughter. So putting aside all of my fears, frustration, anxiety, worries, I pushed through and sent the request. The medical director now has the information and we will wait.
I am praying that today will be a much better day. Yesterday was an improvement. Yesterday Lydia was even able to get herself in the crawling position all by herself. That girl amazes me. She does not feel well and she still pushes herself to do stuff. It was pretty cool. I had tears in my eyes. She is even working really hard on her transitions from sitting to laying and laying to sitting. Also, she is so smart. The stuff that she figures out in play with her sisters, still blows my mind. She is capable of so much. I am SO blessed.
This storm has been pretty intense. It has been a long week with a very sick baby. The other girls have done a great job at helping her get better. Lydia is so blessed to have those girls. My patience have been tested and tried. However, as storms keep rolling in I find it easier and easier to just trust. It is still really hard. There are many times I feel like walking away, but I feel Him here. I know He is here. It is in the small things. He is here and He will not forsake me. Even when the winds are raging, the rain is pouring, you are dodging the lightning bolts, He is there. He is holding you and He is just waiting for His perfect timing. Not easy, but so worth it.
Ellen also said that she prayed and asked Jesus in her heart. Oh how happy I was. She is such an amazing kid. She is so on fire for God, learning His Word, doing as He asks. We have been having a lot of faith conversations lately. We talk about how important it is to constantly rely on God, knowing we cannot do anything without Him. What great teaching moments God has given to me, but to my children as well. What a beautiful blessing that I never expected.
Sometimes when you get to the other side of the storm you question why you were even stressed to begin with. But during the storm the emotions and feelings, the doubt, the frustration, the aloness are real feelings. While you know you should not feel them, it is real. Faith is not something that comes easy and I think when we feel like we have it mastered, God gives us something else. It is in those storms that we grow, our faith strengthens, we learn, and we become better people because of them. Or that is how I want to look at it. Through every storm I have become stronger and I know that I am a much better person that I use to be. Praise God.
We are not through this storm, but we are getting there. God is teaching and using us. God has some great things in store. While I was writing this, I had to step away to get Lydia to find that her pump did not work last night either. Maybe God is saying give it time, Lydia can get to the fluid that she needs. Or maybe it is just a laughable moment. Either way, we will try again tonight, that is if she does not surprise us and drink her goal!
Some verses that were given to me in this storm by some friends:
In Psalms 121 it says that "He will not let your foot slip"
2 Cor. 4:16 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.
17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison,
18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
IPeter 5:7 "Cast all your cares on Him, for He cares for you."
Some great encouraging verses. Thank you and thank you God for your faithfulness and your promises. Thank you for being patient and being there for us.
Our prayer requests are: that she can drink her 16oz a day, she can gain weight, that she begins to heal, her lungs get better and her coughs gets better. Patience as we wait for a new doctor and patience to continue to weather the storms. I also pray for all of you, that you know our Father, and He meets all of your needs right where you are at.
As I feel the walls of our house closing in on me with medical equipment, I look at this sweet little girl. This girl who is content and happy. A girl who has taught me so much. I hold her close and pray with her. I give thanks for her and just hold her as close as I can. The walls often seem too close, but I think about a life differently and I would not want it. I would not be the same, she would not be the same.
Often times we cannot think of a life like hers or his. We cannot think that we can handle it. However, when we are placed in that situation, we cannot think of life differently. I would lose so much if I was not in this position. I would not be the person that I am.
I think about what I would be missing out if abortion would have been an option (it was NEVER an option, but just a thought). It is a fear, something unknown. Just because she had some issues, does not make her any different. My life changed drastically with the other girls who were healthy. There were many unknown factors, but joy and excitement nonetheless. None of that was really different with Lydia, but a label, wrong facts, and other peoples opinions clouding a huge blessing, a beautiful baby.
We don't know what we are capable until we are there. We don't know our full potential until we run the race. We don't know what we really need until we are given it. So to look at something that may or may not be, to look at something that seems so big and to give up on that before even trying, we are robbing ourselves of the greatest blessing. The road is not going to be easy no matter what. We live in a fallen world, we are sin...so why do we think that we are better and make an uninformed decision. Just because one person says it is not worth it, why give up before you start the race?
Fear can get the best of us, but it is that fear that gives us the greatest blessings too. Walk with Him in faith, trust His plan He has set before you, and trust that He knows better than you. You will not be disappointed, He will be there, He will hold you. Even when you do not understand. Constantly look at who you are and how you changed because of that fear, because of that storm. I know that I never thought I could do what I am doing, never thought I would be a stay at home mom, much less taking care of a specially abled child. The love and the joy, the laughter and even the storms, have made me who I am today and I would not change one thing. The same goes for all my children. They are fearfully and wonderfully made and I think they are perfect, extra chromosone and all!