Adjusting to the New Normal

Jon here. The past day has been showing us what the new normal is. Finley had a bumpy Tues. night/Weds. morning, a calm mid-morning, a great afternoon and a bumpy Weds. night. She is still on the high-frequency ventilator and will likely be for the next several days. Her oxygen levels are still good but have fluctuated somewhat based on her condition at the different times.

The nurses flipped her on to her stomach yesterday and she tolerated that for a few hours. After a sudden decline, they then put her back on her back but rotated 180 degrees from her previous position in order to allow her neck muscles to loosen and move. One of the nurses said it is not uncommon for babies on the high-freq. ventilators to have some neck issues as they do not allow movement and in turn the muscles do not develop properly.

Her lungs appear to have some fluid left in them and it continues to break up and requires suction to be removed. It is a necessary cycle in that they want the fluid and mucous removed but it can clog the tubes while being removed. They don’t know if this is what caused the decline, or if she was just done being on her stomach.

Liz taking over now…. So that was last night between 7-8. She recovered and had a good night until about 3:00AM when she had another de-sat.  They decided that she is getting too puffy and has too much fluid accumulating between the cells, which could also be contributing to some of her more recent issues so they gave her a diuretic (Lasix) to help her pee off more fluid and also decreased her fluid intake somewhat. We have gone back a vent setting and her oxygen needs have fluctuated between 28-35%. Today is going to be a day of recovery. They aren’t really going to mess with the ventilator at all and just want to keep her calm and stable.  It does appear that the air is out of her bowls (for now) and they “think” they heard more right lung in the back. That isn’t going to change things drastically, but it would be really good for her to have more lung hiding. If all she has is the right bud, it will continue to grow until she is about 8 or so.

I had a rough morning emotionally. To say this is hard is an understatement. Nothing can prepare you for your child to have a life-threatening condition and what it is like to have to just wait around and watch. It’s hard not to let the numbers rule your state of mind. The nurses always say, “watch your baby not the monitor.” The monitor can make you crazy.  I talked to a few people this morning to help me through this moment and I will share what I am learning from them.. Giving it to God isn’t magic that gets waved over your problems – it is a surrender, but it is being honest with God about how you are feeling and trusting in his mercy and his unfailing love to comfort you. Are you able to believe this all the time? Probably not, but you just keep reminding yourself this and talk to God and your support people. I felt God’s love today come through several people. Thank you.

They have tentatively scheduled a Tues. morning operation  but realistically do not think that she will be ready. This is not a setback but rather just waiting until she shows everyone that she is ready to undergo this next hurdle.

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4 thoughts on “Adjusting to the New Normal”

  1. I know surrender is never easy. Just know the Lord is with Finley during this time. I have been praying for each of you so much. I look forward to having Finley in my toddlers class someday just like I did with Rowan.
    God is bigger than anything we go thru and sometimes life just does not make sense. I wanted to share these verses with you that have been a comfort to be in some really tough times.

    “Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary and his understanding no one can fathom. He gives strength to the weary, and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall in exhaustion. But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, the will walk and not be faint.’

  2. What a beautiful reminder to live in complete submission and trust in God. Reading these blog entries, and hearing your Faith and trust in God, is such an encouragement to me!

    I pray for Finley often and know God will continue to hold your whole family in His hands.

  3. LIz,
    It is always difficult to turn things completely over to God, but I am so glad you are finding comfort in people He brings in your life to say the right thing at the right time (if there really is a right thing to say in these difficult times) and through the power of all the prayers for you and your beautiful family. Two of my favorite verses of comfort are Psalms 73:29 My flesh and my heart may fail me, but God is the strength of my heart and my portion forever.
    Psalm 16:8
    I have set the LORD always before me. Because he is at my right hand,
    I will not be shaken.
    Its amazing to know that the God who can calm the ocean loves your sweet little girl more than we can even imagine. She could not be in better hands. We will keep praying for strength for that beautiful little girl.

  4. I know how you feel with wanting to watch everything and trying to learn to adjust to this new path in life. I also would watch the numbers ALL the time and freaked out if I heard beeps or something flashed even when they said it was OK. It is hard when your little one is sick and all you can do is watch, pray, and try to let her know your there but in the back of your mind you just want to waive a wand and make her better. She is a STRONG girl and so are you guys and she is with a GREAT team of doctors to help her. Stay strong and we will pray for you all.

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