Woke up with a black crows song in my head. I don’t even like the black crows but my good friend Nick Diamond has played this song like 100 times around me. No accident…
Well, well, well
If you need it, God’s got it!
God’s got everythang that you need
If you need it, God’s got it
God’s got everythang that you need
If you need it, God’s got it
He’s got everythang that you need
He’s got every, everything a poor boy needs.
We were moving a little slow this morning. Too many late nights at the hospital are catching up with us. Today we walked in the NICU to find that the night nurse had decorated Ryman’s door. Kinda scary cause you know they plan on her being here for a while but also awesome that they took the time. She started the day off with ammonia level of around 40. She is on full feeds and the plan is to take her off all dopamine and dobutamine before lunch. They even want to back her off all the pain meds some, which will make her a little more aware we are here. The EEG last night is still happening but we are told that it’s almost done and that at some point today they will remove the ventilator. This is so EXCITING!!!!!
Fast forward 4 hours. Off all those meds. We now have the mummy head used for the EEG off also. It was pretty freakin cute. The EEG nurse even after a 15 hour day and getting called back in went the extra mile and made her a little bow for her head. Think it’s that this little nugget is just so dang cute everyone immediately falls in love with her. I’m probably gonna hate this in 16 years. Also.. The ventilator is OUT!!! She’s breathing on her own like a little boss right now!!! So proud of her. Love that she keeps reminding me how strong she is.
Liver transplant update:
Still waiting on the exact diagnosis. Looks like its gonna be Thursday before we get the info. Brandy and myself are still possible donors but there are some catches. Basically we are going to have to get Ryman flown to whatever city we pick for testing before we can be matched. Then we’ll need to go to that same city and be tested ourselves. Also we learn a little more about what problems for Ryman post transplant could happen. It’s very scary and nothing is 100%. Well…. Not statistically speaking. We believe that God has taken care of her this far and he ain’t done. I keep reminding myself of this.
23 “‘If you can’?” said Jesus. “Everything is possible for one who believes.”
24 Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”
I know that right now Brandy and I could use prayers not for what we believe but for our unbelief.
This is Brandy, It is 3:26am and I am up to pump. What a crazy feeling to sit in the nursery and pump without a baby in the house. They are able to mix breast milk in with Ryman’s special formula, this is great since it will help build her immune system. So I am pumping away in hopes that this makes Ryman even stronger than she already is.
I called to check in on her before I started and things are looking good. She hasn’t had anymore spells of her blood pressure bottoming out so they are weaning of the meds for low blood pressure. Her latest ammonia level was in the high 30’s which is great. They are happy with anything under 80. So we are extremely happy about that number. Especially since she is getting large feedings. This means the meds and the balance of formula are working well to eliminate the ammonia.
We are hoping to be off the ventilator at some point today but are in no hurry to rush it. I want her to be well and ready to do all the work on her own and yesterday was such a big day with surgery. She needs to rest up. We are hoping to get to meet with the Liver specialist today to start to explore the possibility of either Jeremy or myself giving Ryman a piece of our liver. We do not know much about the process thus far but every day we learn so much.
Jeremy & I have been getting messages from so many that are praying for our sweet little nugget. We are leaning into God so hard right now and have been able to get through the past few days knowing that he is holding her and has a plan for her. It makes my heart beat faster to think about all those she is already touching. She is only on her 7th day of life and yet has made so many stop and appreciate the little things in life we take for granted on a daily basis.
I’m going to get some more rest but hopefully we are able to update some more progress soon. Love you all so much and are so grateful for all the prayers. We know she/we are not alone in this.
‘Trust in the Lord with all your heart,
and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths.’
Day started off amazing. Found out they discontinued the Ecmo machine at midnight and currently had an ammonia levels of 29. We rushed to the hospital this morning just in time to give our little girl a kiss before she had surgery to have the cannula removed. They were able to reposition her onto her right side. Bet shes happy to not be staring at that left wall anymore. The room looks completely different. No dialysis, no Ecmo, no plastic tubes everywhere carrying her blood, one less nurse, and most important is that we are that much closer to holding her. They moved some chairs in now so we can just sit and hold her hand. Can’t explain how nice it is to not just stand and stare at her. Surgery did have a few problems. Her blood pressure bottomed out and they had to jack up the dopamine and dobutooo??? something. Around 1 we got an ammonia level of around 54 which we are told is still okay and that its part due to the fact that the food levels have been increased and still trying to get the food/meds formula right. We knew that this was gonna be a process. Had some great friends distract us by taking us to lunch which was so so so appreciated. Got back from lunch to have a meeting with the geneticist who informed us a little more about what future plans would be. Liver transplant is still the best option. Good thing is that Brandy and I are candidates for a living liver donor. Right after the meeting with him her blood pressure bottoms out and oxygen intake drops way low. She has since done this 3 other times. We are a little worried that this could be due to the ammonia level from the first day. They are doing an EEG over the night to check this. This could also be due to a doctor placing the breathing tube in to deep. We are hoping its the second.
All and all we feel like this has been an amazing day. Lots of big wins. As we left for dinner the room next to us was getting a very sick kid. Tonight id like to pray for that baby’s family and hope that he can calm their hearts like he did ours during their storm.
Here are pictures from last night to this morning.
Had to add this photo of her during here EEG.
Started the morning off with Ryman having 4ml of formula (I’m guessing an hour) and the dialysis working at 40%. We are ending the day with her taking 10 ml of formula and completely off the dialysis. This seems like great progress. We are hoping and praying that everything goes well over night and that we can stop the ecmo tomorrow at some point. All of this could change very fast with 1 bad lab which are being run every 2 hours. She’s fighting through the meds and keeps trying to open her eyes every time she hears our voices which gives us great hope.
GREAT news just in is her 6pm labs for ammonia levels are at 29. This is great since dialysis was stopped at 3pm. Boom!
We have no doubt that family, friends, have spread the story of Ryman’s challenge and have COVERED her with prayers. I honestly don’t feel like I can stress how much we have felt God’s hand holding hers. We have been absolutely blown away with the love that people have poured out and continue. Your emails, text, phone calls, meal, and pop in visits are amazing. You are keeping our cups full in a desert.
My good friend Ashley Warren sent me this on Friday. “God made and equipped you specifically to be Ryman’s parents. She’s so blessed to have you guys already”. Please go hug and kiss your kids right now and thank God that he gave them to you.
-Jeremy, Brandy, & Ryman
She’s a 1 in a million!
Ryman was moved from Baptist hospital Thursday morning to Vandy NICU. She had an Ammonia level in her blood of 1581 (average is 40). This is due to a metabolic disorder. She started the day off with having a surgery to insert a line in so they could use an Eccmo and Dialysis machine at the same time. Basically they wanted to get this ammonia level down very very very fast so it wouldn’t effect brain functions. Within a few hours they had it under 100 which is absolutely amazing. By using the Eccmo machine they had to use blood thinners which could cause bleeds in her brain. They have her on a ventilator and sleeping and she will likely stay this way for the next few days. Today they have changed the Dialysis machine to a much slower one that should keep and help her stabalize. There are 2 nurses by her bed 24 hours a day… already an attention hog!
What we know about metabolic disorder.
It’s one of three enzymes in the early stages of UREA cycle, 1 in a million. This morning we were told that this makes this the problem worst case….. of course it does. She basically can’t break protein down. Naturally the body breaks muscle proteins down and repairs them daily for growth. You can see how this is more then a diet issue. The immediate goals are this: First, try and get her off the dialysis. Second, test out foods and meds. Then we can remove the surgical line and wake her up. If you only new how bad we wish we could hold her. It will likely be a few days to figure out which exact enzyme it is. There are only a few places in the world that do this testing and its done by hand. They already have Ryman’s blood and are hoping we hear back by Tuesday.
Long term effects and plans.
First we need the level of ammonia (1581) to have not messed with any brain function. The doctors assure me we caught this very early but we honestly will not know for weeks or months if this has slowed her down. Big one here…. If she qualifies for it which is the only way there will be any quality of life she will be put on the liver transplant list.
Through all this chaos Brandy and me are very hopeful. Every time we feel like we are about to break, God continues to show up. We continue to remind ourselves that God doesn’t make mistakes and that ANYTHING is possible. I wish I could tell you how many nurses, doctors, social workers, desk clerks, ….. have said that its a miracle that this was caught when it was. We almost took Ryman home Thursday night and if we had she wouldn’t be with us now. The Eccmo team brought a baby lamb in that is currently watching over Ryman. How fitting!. We truly appreciate all the prayers that have already been said and encourage them to continue for the doctors, nurses, staff, people in the waiting room that’s life we can impact, the transplant team that will one day help rid this disorder, (to in my option the most important) the family that will give up a baby liver for Ryman one day.