Day 60

We had our first pediatrician visit with Dr. Ragsdale on Friday. Ryman weighed 8 lbs 8oz. That is 3/4 pound in a week and went from the 3rd percentile to the 10th. She is going to be a chunk, I can’t wait. She has been eating great and we just upped her formula recipe again. We may get to our goal weight sooner than I was thinking. She had her immunizations and we successfully made it through the night with no fever, just some fussiness. So relieved. We go this coming Thursday to check her ammonia again and having similar symptoms for that indicator would not have been easy.
We got the official UNOS (United Network for Organ Sharing) letter on Friday as well. Ryman has been on the transplant list since June 6th. She has a PELD (Pediatric End-Stage Liver Disease) Score of 30. On July 5th (30 days) she will move to a 1B status. The only thing higher is a 1A and that is if you are on life support. I am not sure how many organs will become available and how quickly. Ryman’s current state could allow us to wait a little longer since she is handeling the protein well right now. In the back of my mind I keep remembering the statement one of our DC geneticist said, this is called the honeymoon period and that Urea Cycle children can not be trusted. There is no way to know how long this honeymoon period will last but in previous cases patients do well for a while (1 month, 3 months, a year or more) and then begin not to tolerate protein again. I’m praying this honeymoon period last as long as possible. In the beginning I looked at a liver transplant and thought, this will fix it… we will not have to worry about her ammonia going up. The longer we are home and she seems like a normal baby the scarier a liver transplant becomes. I forget to think long term. Right now things seem not as complicated, I’m getting into a routine of mixing her meds and formula every day. That’s seems easy at the moment. So having the most complex organ transplant done on our little girl seems way more scary than before. It’s hard to look at her and think that she is extremely sick because other than her deficient enzyme she is a completely normal baby. But that one little missing piece is a huge deal and I have to remind myself that for long term the transplant is the best option. When she needs to start eating food what would that look like. What type of diet would she need to get exactly the amount of protein she needs to grow but not to much that it causes her ammonia to go up.
I know that Ryman’s life has touched so many already and God has big plans for her. I sometimes question why her plan has to include so many battles right from the start but she has already proven she can fight through the toughest. She is growing stronger everyday! Dr. Ragsdale said her cooing was that of a 4-month old. This gives me so much hope that the ammonia was not high long enough to do any cognitive damage. We might have a smarty pants on our hands. Especially with all the doctors and nurses she will have in her life. I think that she over heard all those daily doctors rounds at shift change and their medical lingo and will probably be able to talk over our heads before we know it. Instead of bedtime stories for the first month she got doctors discussing the last 12 hours, some of that had to seep in.
I have been talking with the mother of the little boy who was at Vandy the same time as Ryman. His name is Sawyer and he is such a little fighter too. It was official last week that the DNA results from Baylor showed that he has CPS1 as well. Sawyers mom is such a sweetheart and it is nice to have someone to talk to about the meds, formula, how scary it is, and just to compare what’s going on. She gets it, she is the mom of a urea cycle disorder baby who also had no idea that anything was wrong. She is a mom who is scared of what the day holds. She worries about ammonia levels and what the future looks like. She is a mom who will do anything for her baby. I don’t think God put two babies in the same hospital the same week with the same extremely rare disorder for no reason.
Tonight I thank God for giving us our little girl. I admit that I am a little angry and that I am unsure of why her story has to be what it has. I think its only normal for us not to understand. If everything went the way I wanted it to how would we ever grow. I have leaned on God more during the dark hours at night since Ryman was born then I have ever in my life. Why is it that it takes such large battles to pull us to him. I am trying to trust that his plan is one that is necessary for us to grow and be the best parents that Ryman could possibly have. How much of her first 2 months would we have taken for granted. Someone in the elevator at Vandy ask me how old she was and I said 50 days. They looked at me and said ‘Days?’. I said, yes we are counting each day with her. Oh how lucky are we to be starting Day 60 with her.
So much love, Brandy
Eye lashes.

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First bathing suit. She had so many and Aunt Coco bought a kiddie pool for her so we had to.

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Outside time.

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Exhausted after shots.

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Baby sitting.

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First time going for a walk with Ryman and the girls. As you can tell the girls got really hot. Nikki tried to cool down when I opened the fridge.

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4 thoughts on “Day 60

  1. Brandy that is such a good report! It is good to know God has brought another mom into your life who truly understands what you are going through with sweet Ryman. I am so sorry I didn’t get to visit with Ryman when I was back home a few weeks ago, but I know one day soon I will be meeting your beautiful little girl! I am continually keeping Ryman, you and Jeremy in my prayers. 1 Corinthians 13:12

  2. Brandy, Ryman is so precious. She is so blessed to have you and Jeremy as parents. I do not know if Sarah told you or not but there is an organization called Angel Flights that provides low costs or free flights for medical care for children in need. Angel MedFlight Worldwide – AngelMedFlight.com‎
    http://www.angelmedflight.com/ I know they have helped some of our patients and your story is so amazing. Becky Coffey

  3. Brandy…it is so good to hear how well things are going! Your family testimony will be amazing! We have been in uncertain medical situations with both our girls before too. His word tells us to consider it pure joy when you face trials of many kinds because you know that the testing of your faith develops perseverance. James 1:2-3. It is so hard to be joyful in these situations, but it sounds like you all are very joyful right now! Keep leaning….Cole

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