Day 65

I just need to say that I am blessed with the most amazing sister, family and friends anyone could ever ask for. I don’t want to brag but I truly doubt anyone could add up how many people have loved on us over the past two months. I’m not sure where I would be emotionally, physically or psychologically if it were not for their love and support through this all. I did say 2 months!! On Monday Ryman had her two month birthday and on Wednesday she was 10 weeks old! She is really starting to smile and make so many new sounds. We have been face timing Jeremy while he is in Canada. He is going to be so surprised at how much she has changed and grown since he has been gone. He has also changed apparently. A new tattoo for his little girl, that I totally made him call the living donor coordinator to get the okay before getting, clean shaven and a new hair cut. I am going to have a new husband when he gets back. We miss him tons and can’t wait to see him on Sunday!
Ryman had her check up today, it had been a whole 2 weeks since we checked her ammonia. She weighed 8lbs 13oz, 4 kilos, we are getting closer. She had grown in height by a whopping 1 cm. She is no longer anemic, yippee. Her ammonia was 60, which honestly is a little too high for me. Dr. Morgan assured me that he wasn’t concerned. It is trending up but unless it’s 100 I don’t think there is reason to freak out. I was definitely panicking last night due to a dream that she was really sick and I was trying to get her to the ER. Dang dreams, I woke up in a panic and had this scary feeling all morning. I have really been struggling the past few days with feeling angry about the situation she is in. I’ve been reading blogs of other UCD moms and children who have had liver transplants. Some good things to look forward too and some complications to expect. But overall I start to think about the transplant fixing this issue but causing new ones. I think about Ryman’s future and what she will have to deal with. Will she need another transplant someday? What if the liver she gets only last 30 years? What if her body rejects it? So many what ifs that it can drive you crazy and run you into this very dark place. I found my self there this morning and I grabbed my phone and prayed that the Jesus Calling devotional would have something to pull me out if the dark path I was on today. Wouldn’t you know, the exact thing I needed. Live in the moment!
~Today’s Devotional~
June 27th.
Rest with Me a while. You have journeyed up a steep, rugged path in recent days. The way ahead is shrouded in uncertainty. Look neither behind you nor before you. Instead, focus your attention on Me, your constant Companion. Trust that I will equip you fully for whatever awaits you on your journey.

I designed time to be a protection for you. You couldn’t bear to see all your life at once. Though I am unlimited by time, it is in the present moment that I meet you. Refresh yourself in My company, breathing deep draughts of My Presence. The highest level of trust is to enjoy Me moment by moment. I am with you, watching over you wherever you go.

Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul.
—Psalm 143:8

“I am with you and will watch over you wherever you go, and I will bring you back to this land. I will not leave you until I have done what I have promised you.”
—Genesis 28:15

Pics.
Jeremy’s Tattoo.

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Many faces of Ryman.

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Happy morning.

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First Skirt, dad said it wasn’t long enough.

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First painted toes.

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Loving on her stuffed giraffe.

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Her eyelashes are getting so long.

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Janie really wants to be like Ryman.

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Put your hands in the air like you just don’t care.

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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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Day 55

In less than 1 week Ryman will be 2 months old. How can such a short amount of time completely change my entire life. It’s crazy how much things can change even in a weeks time. Ryman is smiling when she is awake now. It melts my heart. We do not go back to get her ammonia tested until the 27th. That’s 2 weeks from when we last checked it. We can take her in if she seems weird at any time but we really don’t want to take anymore blood from her than we have to. She has still been a little low and we need to finish labs for the transplant. She was extremely fussy the past few days because we stopped adding in the breast milk and switched to more Enfamil and Cyclinex-1. The doctor thinks it could be from the iron increase as well. She seems to be having more difficulty going to the bathroom. Today was much better though so hopefully she is adjusting. It’s always scary when her mood changes so much because fussiness can mean an increase in ammonia. It’s hard not to feel like something is wrong or to feel like I am being paranoid. Please continue to pray for strength and clarity through this.
We did have our first outing today. We waited until the sun went down and not many people would be out at Edwin Warner. Our first park adventure and I’m pretty sure Ryman loved being outside. Her eyes have a hard time adjusting to the natural light so I want to make sure we get her use to it. I thought about making a sign that said: Stay Away, Sick Baby. But then I thought that might actually attract more people. I was on guard for anyone running past who might sneeze or cough in our direction. We succeeded at steering clear of anyone. The time outside was so great for me too. I need the sunshine and fresh air as well. Aunt Sara was here to help out and capture the first park trip. We love her so much! Jeremy also had his first Father’s Day this week!
I had to do a little shoot with all our girls:

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Park adventure:

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Fun pics:

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Day 52

I cant believe we have past 50 days! Ryman has been a breathing (well excluding two little incidents) human for longer than I’ve ever stuck to any diet or exercise routine. She has also caused me way more fatigue and exhaustion than either of those things. Completely worth ever hour of sleep lost though. I do have some amazing friends and family though. Huge thanks to everyone who have allowed me to grab some sleep and showers. Those two things make you feel like a new person.
Yesterday we went to get Ryman’s ammonia checked again. It was 57 and her blood count is still a little low. Anything under 80 is our goal so 57 is getting to close to that. Prayers for lower numbers. Two sticks in the scalp this time, she was so not happy about that. I tried holding her for the first one but she is so strong that I couldn’t hold her head still. For the second I opted to let the nurse hold her head while I warmed up her bottle and tried not to pay attention to what was going on. Each time it gets harder and harder. When they put the rubber band on her head I feel like she knows what it about to happen. It makes my heart ache.
We changed her formula yesterday as well so I am hoping that doesn’t cause her numbers to increase.
As each day goes by we get closer to Ryman getting her new liver. She was 7 lbs 12 oz at her appointment so she is gaining weight. 6 lbs 4oz away from her goal weight. They said she is cruising along at the 3rd percentile. She is tiny. Also as each day goes by I not only pray for Ryman’s perfect liver to come when the time is here but also for the family who will have to loose their angel.

So much love,
Brandy

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Day 47 – Picture Blog

Big thanks to everyone trying to help us find a flight just in case Ryman were to get a liver before we are back in the DC area. We are so blessed to have people trying to make connections. Love you all. We will go back to the doctor on Thursday so prayers that thinks continue to go the way they have been.

Just some baby stuff going on in the Little house.

Ryman in her bouncy chair.

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More Mr. Bear time.

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Family bath time, Janie wanted to be a part and Ryman wasn’t a fan.

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Why are babies in bath towels so darn cute? And their daddies too.

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Hair brushing time.
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All clean!

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Janie got up to help feed Ryman at 3am. I couldn’t find her when I was going back to bed. Then saw her here! She wants to be the baby again.

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Mom getting her hands back so she can do stuff around the house! Thanks Ashley Warren for the lesson on how to use this thing!

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Day 45

We finished our first full week of being home with Ryman by ourselves! I have a whole new respect for moms. This is not fun. I think I was under the impression that babies sleep way more than Ryman does. She likes taking cat naps and is then wide awake again. She also likes being held and starts screaming a few minutes after you put her down. Hard to get anything done while holding a baby. Add to this the fact that during the day we can’t let her go more than 3 hours from the beginning of her last feed without eating and 4 hours max at night. Lots of work. Thank goodness for family who come to help and let me sleep! You guys are amazing!
There isn’t as much to update lately since we are just hanging at the house fattening her up. I will try to start just adding picture blogs for a bit until we have news. We are currently working on some potential travel arrangements for getting back to DC as quick as possible when we have a liver before we are actually back up there. There is a 6 hour window and that’s going to be tough! We are looking into some nonprofits and trying for talk to airlines to see if there are ways to hop on flights last minute. If you have your own plane or know someone who does we would be willing to pay for gas and time to fly us to DC with an hour notice :). Yeah we know that’s asking a lot, but worth a shot.
Ammonia was 48 yesterday, we are still getting labs drawn for the transplant and they took 6 ml’s of blood yesterday. She is a little pale today and we are going to try to wait until next Thursday to get the ammonia checked again. Prayers that we don’t get scared during the week going so long without checking it and that it doesn’t actually go back up.

Words from Jesus Calling that I need to be reminded of.
‘Who is in charge of your life? If it is you, then you have good reason to worry. But if it is I, then worry is both unnecessary and counterproductive. When you start to feel anxious about something, relinquish the situation to Me. Back off a bit, redirecting your focus to Me. I will either take care of the problem Myself or show you how to handle it. In this world you will have problems, but you need not lose sight of Me.’

We continue to get so much support and love from our family and friends.
So much love and gratitude, Brandy.

Much needed date night.

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Snuggles with mom.

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Being watched over by her sister.

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Being afraid of her sister. Love this face!

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Crashed out on teddy.

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Day 39/40/41

Ammonia was holding steady at 36 yesterday. We spent our first night as a family, just the three of us (and the girls), by ourselves in the house on Sunday night. It was definitely scary to be alone and we started freaking out a little around bed time. She hadn’t eaten as much and was making these little sighs. After contemplating taking her to the emergency room we decided that we were just stressing and that we would wait and see how she was at her next feeding. She was absolutely fine, crying loud, wide awake and eating very well. I am sure that will not be the last time we are freaking out when she is perfectly fine.

We go back to the clinic on Friday to have it checked again. I also spoke with the transplant coordinator from Georgetown today. She said they are going to present Ryman to the UNOS (United Network for Organ Sharing) committee next Thursday to get her on the transplant list.
Our kitchen has become a pharmacy/chemistry room. I pre measured a 6 day supply of the ingredients for the special formula she is having.

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Funny face.

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Sound asleep with her finger in her mouth.

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Sleeping smiles.

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Curious sister pugs.

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My beautiful and talented friend Brittany Steiger took pictures on Sunday. We got a few back and I am so in love with them. Thank you so much!

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Another cute after bath pic.

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