Grasping onto Hope and Praying for Sunny Days

So apparently Levi almost died today.

They didn’t tell me that until just now. I suppose I could have guessed that from what was going on but “oh my baby might die now” is not something a Mother lets herself think if she wants to stay at all sane.

They did tell my Mom though and she said something about it on Facebook, that was how I found out (I’m not upset at all that she did that, I think she thought I already knew and she was talking to someone else). I had to come back here and ask the nurse if that was true. It’s a different nurse on staff tonight then the one who talked to my Mom but she said the same thing. She said he was in a lot of trouble by the time they got him into surgery. When you see the redness on the belly like we saw, you know we are in a deadly situation.

But she said he is recovering remarkably well and she was so happy that they caught it when they did because they were able to reattach the two ends of the intestines once they removed the dead part. Usually, especially with preemies (which is what they work with the most here in the NICU) they have to put in a colostomy bag until the body heals enough to reattach the two ends of the intestine. He’s also already breathing on his own every now and then and doesn’t seem to be in too much pain between the fentanyl doses so he is doing really well. He even stirs enough to grip my finger a bit.

They are watching him closely now for signs that they missed something, things like fever and redness of the belly. But his belly is still a bit red from surgery and he has a bit of a fever 99.0 but the nurse thinks it’s just from the stuff he’s sleeping on making him warm.

They did also put in a more permanent IV line that goes into the skin in the middle of his chest then enters the artery in his neck because he will be on a higher rate of nutrients for much longer this time and the IV’s kept blowing out and it was becoming impossible to get them into another spot. This morning before surgery they tried for an hour and a half to get another IV in before giving up and just letting the OR surgeon put in the more permanent one during surgery.

It will take much longer this time for his intestines to wake up enough that he can start eating. At least a week the Dr. said. Next Sunday will be my birthday so I’m hoping I’ll get the best birthday present ever which would be that he starts eating and he eats well. It will be long week though. He gets so hungry even though he’s on IV nutrients and all we can do is give him a pacifier and try to comfort him.

Josh and I have decided to get a room here at the hospital again. I miss Jayden (and my bed, home, shower, laundry room) like crazy but going back and forth is just too hard for us all right now. I think it may actually be getting harder and harder for Jayden every time we leave and I don’t have any idea what to do about that.

I have gone through so much this year. Even other more private stuff that at times I still consider to be harder than some of this, and I am doing my best to not get angry. Not at anyone or anything in particular but just angry.

Ok, maybe a little mad at God. I’m tired of this year. I thought that if I obeyed God and continued to trust Him that at some point he would deliver us. It is hard to see that deliverance now. I thought too that the other things had a point so they were easier to accept. The other trials returned me to God and re-created me into a better person in a lot of ways. I kind of feel like “Ok God I already fixed all that crap so now what do you want from me?” But until I know the answer to that I am just trying to hold onto the things I’m grateful for.

I’m grateful that God has held my husband’s heart is His hands and through His strength my husband has been the most AMAZING man through all of this. At every moment, he is exactly what I need and I hope I have been able to do the same for him.

I’m grateful for my Mom and Dad who have cared for and loved Jayden while we can’t be there and been here in the hospital when we need to be at home. They’ve gone above and beyond babysitting or doing some laundry for us and I don’t think I will ever be able to thank them enough.

I’m grateful for my in-laws and best friends and how many times they’ve been here, called or texted and consistently prayed for us.

I’m grateful for all my friends and family who have continuously prayed and offered to help in any way possible even if I haven’t been able to think of anything that anyone could do to help us yet.

I’m grateful for the amazing Dr.’s and Nurses here who have not only saved my son’s life but comforted me, made me feel special and cared for as many of even my needs as they can while also caring for my son.

I’m praying for strength, endurance, joy and gratefulness but I’m also praying for someday, sometime in the future, where we don’t have to look for the silver lining in the rain clouds because it’s just a sunny day.

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4 Responses to Grasping onto Hope and Praying for Sunny Days

  1. Mom says:

    Me too, babe.

  2. Nancy says:

    Praying for that sunny day to come soon, Amanda. Thank you for sharing your heart so honestly.

  3. Andrea Oakley says:

    I am praying for sunny joy filled worry free days for you as well.

  4. Shelby says:

    I am sure so many will agree that we are grateful for you hunny and God has given you this task because Levi is an amazing being coming into this world that is faced with struggle and no one but you could have brought him here and given him the family and Dr’s he needs to come into this world. God is giving you this task because only someone as phenomenally strong from everything he has tested you with could do it. He has put you through hell this year I know because it hurt to watch but he had to make you the strongest he could so Levi had a chance in this world because he is meant for greatness just like you. I love you and I am so sorry how much this wears on you and I cant fathom your struggle but I know in my heart only someone as wonderfully amazing as you could be given the blessing of Levi.

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