CHOP NICU day #5

Well... the news was not what we hoped. 

The neurologist met with Brad and Charis to discuss the MRI this morning. Leo has hypoxic-ischemic encephalopathy (which we sorta knew already). It's a broad diagnosis for infants who suffer brain damage due to oxygen deprivation. There is a wide range of outcomes, but based on the MRI, Leo's injuries are extensive. He also had a bleed in the middle of his brain. His body will eventually reabsorb all of the blood, but according to Brad's understanding, the "space" will stay. This MRI is the best predictor of Leo's long term capabilities but it's not an exact science. Leo's neurons may regrow new pathways because he is so little, but there is no way to know right now. 

In the long term, Leo will still be at risk for seizures and he may have issues with hypertonia. His muscles may be stiff and inflexible and it may impact his ability to eat, sit, crawl, walk... The doctor says they'll know more when Leo is 2-5years old. 

In the short term, Leo needs to breath on his own and eat on his own. The neurologist is optimistic that Leo will be able to be weaned from the ventilator based on his progress thus far, but there is no way to know if Leo will have the coordination to eat by mouth until he is finally extubated. His blood gases from last night were not perfect, so they are not going to start weaning today.

So, please pray

  • that Leo will be able to be weaned soon and breath on his own without apneic episodes
  • that Leo will know how to suck and swallow 

  • for grace for Brad and Charis
We don't know what tomorrow looks like, or next year, or 10 years from now. But we do know that Leo is precious, to God and his parents. We do know that God gave Leo to Brad and Charis on purpose so we do know that He will give them everything they need to raise him. No matter what. Brad, Charis, and Leo are surrounded by support on all sides. God promises hope, joy, and peace when His Spirit is present, and He is.

Comments

  1. KrissyMarch 17, 2021 at 1:25 PM

    Charis, I went to school with Bradley. My daughter (almost 1) has a genetic condition that impacts all the same areas that are projected by the drs to be difficult for Leo, except for breathing. She relies solely on a Gtube unfortunately for her nutrition and her muscles are the opposite of Leo-hypotonic. She continues to progress, but it’s at her own pace. You sound so so brave and trusting as you have walked through this. I know at times I have felt quite alone not knowing anyone else whose baby has had similar challenges. If ever you feel you would like someone to talk to who “gets it” feel free to reach out to me. Leo is handsome and precious!!!! I have been and will continue to pray for him and that he will exceed all medical expectations!

    ReplyDelete
  2. Diane HollingerMarch 17, 2021 at 7:58 PM

    Dear Brad and Charis my heart aches for you as you process all of this information. While you do not know what the future holds for your precious Leo, you do know the One who holds the future and Leo in His loving hands. Praying His grace sustains you day by day and with each passing moment!
    With love and prayers,
    Diane

    ReplyDelete

Post a Comment

Popular posts from this blog

Leo is 3

Image
 *disclaimer* I just need to say that this post was written many times. Many things were written and then deleted. Paragraphs were switched around. Some sentences just didn't make sense at all. Trying to reflect on Leo's life as a whole obviously leaves me a bit at a loss for words. I think there's some good nuggets of truth in here. I know that scattered nature accurately reflects my mind as well. So, here's some thoughts from Leo's 3 years of life because I want to say so much but I never felt like it came out the way I wanted but I don't want that to keep me from sharing it :) A reflection on Leo's 3 years of life, from the perspective of his mom, written without fear of offending or coming across arrogant... I wish that his birthday brought only happy memories and not all the painful ones. We are overjoyed at who Leo is and how he is. We see great strength in his differences and interest in a life we never thought we'd have. But the very moment he wa
Read more

Happy 2024!

Image
 Some goings-on in the Wilcox family :D Leo got a haircut. We shaved the little lion's mane. But it'll grow back. I promise! We just think he's the cutest. So, when he gets a straight buzz, I've been doing it. I feel very accomplished that I can buzz his head and get us both cleaned up afterwards. However, when he gets more of a haircut it's either my sister or my cousin doing it while I hold him. I'm a big fan of the buzz, though. We had a family filled Christmas. Blessed. To be a blessing. Holidays were sweet times. A little story from them: We did a Friendsgiving one night and met some friends of friends. One guy asked to hold Leo and then offered to keep him while Brad and I got food and ate. It was a beautifully weird feeling to plate my food with Brad and sit down and eat while hearing Leo's happy noises from the couch. Leo was chatting away and the guy was so great with him. It was so wonderful to practice setting aside the voices of, "Is he frus
Read more

A Little More of an Update

 Hiya' Friends! These are some things regarding Leo's care, appointments, therapies, development, etc. that are rolling around in our heads these days. Eating, Pukes, Weight We haven't seen nutrition or GI in a little bit. We've monitored his weight in our own way or through some of the appointments we have had. It's not at a totally great place, but I'm not too concerned. He is mostly going up, but has some up and downs just not drastic. Brad and I are confident in feeding Leo some food that we blend up ourselves (instead of the packaged) in order to expand our options of what we can feed him. We are not replacing meals with what we have blended, but just introducing new ingredients into his system in a more significant portion (60mls of blended food). This is a bit of a time-consuming process and so far we have run into one ingredient that did not seem to sit well in his system. He did not seem to adjust to it even with some time. We have seen that feeding him
Read more