So my little 11-pound child not much more than seven days ago is now FIFTEEN POUNDS!! I think it's probably time for a diet ;)
I know that part of it is that he is retaining fluids. An extra dose of Lasix was ordered and then his normal dose has been increased so that he might be pee off some of that extra fluid. The main problem with all of this fluid is that it is causing him to have lower sats. Seems like a weird correlation, I know. Apparently some of this fluid is hanging out around his lungs. His chest x-ray was described as "wet" and "cloudy". He also is having lower sat issues when he is turned on either side. Unfortunately, he cannot just be on his back ALL DAY. They think he may have a leak...super.
Another new development is what is called an "IV burn" or "IV infiltrate". Basically, the medicine that was being pushed through his IV came out of his vein and into the surrounding tissue resulting in a burn type of a reaction. This happened in his scalp IV, just above his left ear. Things like this take a while to heal. One more thing to add to his list. I'll get a pic of it sooner or later.
One prayer request that I admit I'm ashamed to ask for. I am having a really hard time adjusting to seeing Malachi with this additional "equipment". He just physically looks COMPLETELY different than the last time I was able to hold him. I mean, he now has a trach with vent tubes sticking out his neck and a huge tube sticking out the front of his tummy AND he's over three pounds heavier. Just pray that I quickly, and I mean quickly, am able to look past all this extra stuff and just care for and love on my baby. I'm hoping to be able to hold him again in about a week and I'm praying that this will get better when I'm actually able to physically help with some of his care.
Today when John and I were at the hospital, I just cried. Looking at my baby, I cried. Looking at the monitors, I cried. Looking at John knowing that he wanted to make things better for Chi and for me, I cried. Please pray that I can do this.
I'm a "blog stalker", so you don't know me! :) But it is to your advantage, b/c I pray for you all a lot! ;)
ReplyDeleteAnyways, you should NOT be ashamed to request prayer for the things you're asking for. This post brought tears to my eyes. I can't imagine how hard it is to see your son with so many tubes hooked up to him... and how you're "hoping to be able to hold him in a week" breaks my heart.
You are one strong, Godly family! Malachi has some physical challanges, but God has definately blessed him with an awesome mommy and daddy!!!!!
I'll keep praying!! :)
We're praying, Marissa! So many of us are praying. Please don't be ashamed to ask for prayer for things like this. It's helpful to know how to pray for you. We love you and know that you CAN do this because you have the ultimate Comforter and Healer on your side!
ReplyDeleteThis is Chad Ewing. When my niece Lindsey was a baby I remember they had to put her in Akron Children's Hospital and seeing my little girl so small being hooked up to all those machines made me cry then and now just thinking about it. Stay strong you have had to endure more than I believe I could. Me and my prayer pod have been prating for Chi regularly. Last week I forgot to mention him as a request and as the kids were praying I was thinking about him and one of the girl prayed for him. Evan's teen are lifting him up in prayer regularly and I am praying that you and John will be strenghtened as well!
ReplyDeleteIt is ALWAYS hard to see our babies with tubes, wires and machines hooked up to them. It takes time to get use to it, I had 2 babies in the NICU and it was the hardest times of my life. Have trust in yourself and God that you will get through this. Sometimes we have to just do it, people ask me all the time "How do you do it?" I JUST DO!! She is my child and I have to do what I have to do to make sure she is with us and healthy. Give yourself some credit you are doing well and doing all you can for both children.
ReplyDeleteHugs,
Crystal and Eva
Marissa, Don't be ashamed, it's something that you have to adjust to and that takes time. It's ok b/c anyone would be finding it hard. We are praying and will add this in, tonight.
ReplyDeleteMarissa,
ReplyDeleteI know you don't know me. But I can imagine how hard it must be for you to go through this... to only want your child to be better... and to have to accept that he needs extra help. Lord knows I struggle with that, too -- have been struggling with it today, in fact.
I know you wish Malachi didn't need all of these things, but I pray that they will help him get strong and heal and THRIVE. My son has so far avoided a trach but I can imagine what you're going through... I pray that this extra help breathing will make things so much easier and more comfortable for Malachi so he can heal and grow.
My son has a g-tube and I really, really resisted it at first. It felt like giving up on him eating orally, and it felt so permanent. But the fact is that he aspirates and he won't be able to eat orally for a long time, so he needs this tube. And I will say that a g-tube is much, much easier to use than an NG tube, which Malachi would have been pulling out all the time once he got bigger. (And NG tubes aren't fun to replace!) The g-tube is probably more comfortable for him, too. The NG tube irritated my son's airway and made him cough a lot. Once he got the g-tube he was much happier and able to focus on other things.
Like Candace said, don't be ashamed. We all struggle with these things. We all just want our babies to be healthy and to not have so many struggles. You and your husband are such amazing parents and you exhibit such faith and grace through all of this. Malachi and Emmerson are so lucky to have you.
Hugs and prayers,
Amy
Marissa, We continue to lift you and your family up to the Lord. I am so thankful that God told us to take everything (and when God says everything He means it) to Him in prayer. And His peace will wash over us so powerfully that we can't even understand it. I pray that if you can't hold Chi right now - you can kiss his little toes :) We love you all! Diane Davies John 16:33
ReplyDeleteMarissa, we mourn the loss of our typical child. We mourn the new life we live to give them what they need. With time it will come, but its not crazy to ask for that prayer request. Its not a normal thing to see and with time you can accept them...and hopefully with time it will all be gone. I still mourn but i have my baby and every day i accept that trade for he is with us and flourishing. Malachi is a fighter and he will show that this too won't set him back either! Think of these new things as accessories and think of ways to make them not so scary. Maybe the nurses might have ideas? We're here for you anytime!
ReplyDeleteMarissa and John, we are praying! Thank you for sharing specific ways we can pray! God is your sustainer and strength, hope and peace...we're trusting Him to carry you, comfort you, and encourage your hearts! We love you!
ReplyDelete