144 hours

Brandy:
Today would have been my last day of work if I hadn’t been induced last Tuesday. Ryman wouldn’t even be here yet, crazy to think about.
I’m pumping again, I have to apologize to any friends I have who are moms who breast fed. I would have helped out way more if I’d realized how literally ‘draining’ it is.
Speaking of breast feeding, Ryman started bowlless feedings last night. Which basically means they decided to try to give her more of her formula in less time. We thought they were going to do two hours of formula and one hour off to start. However, they were being a little aggressive and tried to do 1 hour on, 2 hours off. The thing with this is that she is getting way more protein at one time instead of the continues drip which spreads it out. I just called for an update and indeed her ammonia levels are back up to 96. We want to keep it under 70 if we can. So they gave her some extra meds, the ones that go and scavenge the ammonia to get rid of it, and stopped the feeds. We should get another reading at 9 and will reassess and more than likely try the original plan of 2 hours on, 1 hour off. I’m sure the formula will be tweaked some as well.
Today is the day we need to make a decision on which hospital we will do the transplant at. This is an extremely tough thing to do. What if we pick the wrong one? So many concerns. Prayers that we are able to pick a hospital and know that no matter what god has this.
We did get to hold Ryman yesterday but the best part for me was hearing her cry. Never did I think that I would want my baby to cry, but I hadn’t heard it since last Thursday night. It was such a sweet sound. She also opened her eyes for us last night and was so aware. She would look at me and then at Jeremy. I can’t tell you how amazing this was. I really hadn’t seen her look that aware since the day she was born, a very very good sign.
Dr. Morgan, one of our several geneticist, was in the room at one point and Ryman sneezed. I have been scared to death when she had been doing that, what if she is getting sick? But he said that is a very good sign, it takes several parts of your brain to sneeze. Apparently the sneeze is a very complex thing and he said he was optimistic before but now has data to back up his optimism. A great thing to hear your doctor say!
I get stressed and worried about every little thing and Jeremy is having to keep reminding me to stop freaking out. Boy am I lucky to have him. Not only is God taking care of our little girl but he has given Jeremy the strength to guide and truly lead our family. This is a lot to take on yet he has faced everything with out hesitation. He is such an amazing daddy. I knew he was going to be but seeing him with our little nugget makes me fall in love with him even more. He has also been putting up with my crazy moods pretty well. One minute I’m extremely happy at our progress and the next I’m super depressed. What gives hormones!!

Today I pray for strength for us both and for me not to be a hormonal basket case!

We also received a card from a small group at Crosspoint. We are so very grateful and were so sad that we missed you guys when you came to drop it off. We were getting to give Ryman a bath . Well dad did all the work, he was just so good at it ;).

As you give yourself more and more to a life of constant communication with me, you will find that you simply have no time to worry.
(Thanks Marcia, needed this one)

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9 thoughts on “144 hours

  1. Making hospital decisions is hard, but believe that God will bless whichever decision you make and that there is no wrong place because God will be with you all wherever you go.

  2. Praying with you..Try and be still and know that God is already in those decision , know that he is with you and for you…remember that your entire family is engraved in the palm of his hand…Much Love

  3. Good morning Ryman, brandy, n Jeremy! Great news this am! Listen to the voice that u hear n feel n ur heart bc that’s The Lord telling u which hospital to chose! Happy u got to hear her cry n sneeze! Such precious noises! May God continue to bless each n everyone of u n the drs n nurses! Luv u all

  4. The Mixsons are praying for you guys. And there was no doubt in my mind that Jeremy would be anything BUT a wonderful dad:)

  5. Brandy you and Jeremy are amazing. Chase and I are so proud of you. I always knew a child would be lucky to have you both. I was glad to hear her bedding came in (inside joke) Ryman needed it to come home to. We are endlessly praying for direction, peace and strength.
    It must be a little kid voice thing- but everytime chase reads and talks with her she smiles. It’s pretty awesome. Those two are destined to be best buddies! I’m looking forward to smelling that baby smell right off her when I get back up there.
    Love you always,
    Aunt C & chase

  6. Brandy, thank you for sharing your heart, this family is so
    blessed to have you! You are an Amazing women and I believe the
    women God intended for my son. Watching you both cling to each
    Other and God is amazing! As a mother I could not have asked for a
    more beautiful , loving understanding daughter , you love my son
    well and There is no doubt what a wonderful mom you already are.
    God is using your strengths and Jeremy’s strengths to bond you to
    this journey . When you stress today about this decision remember
    trust yourself, which hospital does not limit our God he will be
    with you in the decision and will be with our Ryman at either
    place. Much love

  7. I just learned of this early this morning. Brandy, I planned to call you at work today to wish you well since I thought you would be enduced tomorrow! Now that I have found this blog (thank you Brad), I am all caught up….and sitting at my desk in tears and in awe of the strength and determination from you three!
    I am thrilled at the progress and hopeful the she continues to get better. Choosing the hospital is difficult, but I have faith that you will do well.

  8. i concur…GOD will guide you to the choice you make 4 a hospital…i have NO doubt. life is made up of millions of moments…and we are so grateful you chose to share those moments with all of us. It grounds me even more to see you and your family letting GOD take control…and i know he will use your little “nugget”(love that) to show everyone else what a miracle is and to see it happen with ones own eyes.
    Blessings and Love Jo

  9. Brandy and Jeremy, I have been blessed and inspired by your posts so far. I wanted to share some additional words of encouragement. It’s actually from my pastor’s daily emails I receive. It is on the subject of fear.

    All of us deal with fear at some level. The Greek word for fear is ‘phobos.’ From it we get our English word phobia. There are many phobias. Claustrophobia is the fear of being in a confined space. Agoraphobia is the fear of being in large open spaces. Automysophobia is the fear of being dirty. Ablutophobia is the fear of washing or bathing. Acrophobia is the fear of heights. Catoptrophobia is the fear of mirrors. There are hundreds of them. There is even one called phobophobia. It is the fear of being afraid. Fear is actually rampant in our society. We are afraid of failure. We are afraid of not being accepted. We are afraid of change.

    Have you ever thought about how many times the Bible says “fear not?” I read that phrase is found 365 times in the Bible and that there’s one for every day of the year but I have not counted them, so I do not know if that is true. But I know that the Bible says it a LOT!

    The fact is that our fears lead us to worry and worry causes serious physical, emotional, and spiritual problems. Jesus gave us a great word in the Sermon on the Mount to help us deal with our fears. He reminds us that worrying about things does not change a thing. Can you make your life longer by worrying about it? The opposite is more likely true. The more you fret and worry the more you will lessen the quality and perhaps the length of your life.

    I had a Greek professor in college named Dr. John Thomas. He was a great friend and teacher. We would often ask him questions about the Greek language that would jump ahead of our ability to comprehend (we were in an elementary Greek class). His answer was always “sufficient unto the day is the evil thereof.” The modern translation of that verse he was quoting is “Each day has enough trouble of its own.” He was telling us not to cross a bridge in our studies until we got to it. Learn what we were studying for that day and that week and worry about the other things when we got there because we were not prepared to handle it yet.

    Understand that Jesus is not saying that we should not plan for the future. Be sensible. Use your head. But he is saying that we should not worry about things that we cannot do anything about. Is Jesus saying not to plan for retirement or not to buy insurance? Certainly not….but He is saying that we should not handcuff ourselves by playing the “what if” game. That game looks into the future and causes us to be overcome with fear about things that we cannot control. Another game that we often play is the “if only” game. Just as “what if” looks into the future, “if only” looks into the past and wishes for things that cannot be changed.

    The bottom line of this passage from the Sermon on the Mount is to have faith in God. If we are going to live our lives without fear and anxiety and worry, we are going to have to learn to trust in God. Jesus reminds us that creation has a divinely inspired program to take care of itself. Birds do not become frantic. Animals do not sit around and worry. Faith is the key that will unlock many doors for us. Here is a word of warning. This does not mean that you passively resign yourself to the inevitable as if everything is going to happen in a predetermined fashion. We are not puppets on a string.

    Here is a word from the Word: (Matthew 6:25-34)

    “This is why I tell you: Don’t worry about your life, what you will eat or what you will drink; or about your body, what you will wear. Isn’t life more than food and the body more than clothing? Look at the birds of the sky: they don’t sow or reap or gather into barns, yet your heavenly Father feeds them. Aren’t you worth more than they? Can any of you add a single cubit to his height by worrying? And why do you worry about clothes? Learn how the wildflowers of the field grow: they don’t labor or spin thread. Yet I tell you that not even Solomon in all his splendor was adorned like one of these! If that’s how God clothes the grass of the field, which is here today and thrown into the furnace tomorrow, won’t He do much more for you-you of little faith? So don’t worry, saying, ‘What will we eat?’ or ‘What will we drink?’ or ‘What will we wear?’ For the idolaters eagerly seek all these things, and your heavenly Father knows that you need them. But seek first the kingdom of God and His righteousness, and all these things will be provided for you. Therefore don’t worry about tomorrow, because tomorrow will worry about itself. Each day has enough trouble of its own.

    I am praying for Ryman and you both. Continue to be strong and allowing God to guide you.

    Your friend (and AMEC co-worker),
    Michael Pigg

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