I think I spoke too soon on Thanksgiving about being home and Ryman almost sent us to the ER.
She threw up on Thanksgiving night and then twice the following day. We ended up being able to get into the pediatricians office instead of having to go to the ER.
We are pretty sure that she was just having reflux due to stopping the Zantac the week before.
Which may explain some of the fussiness. She is also still teething, or at least we are pretty sure she is.
It is so hard to tell but after feeling of her gums every day for the last two weeks I am almost definite that something is going on because they feel different.
She has been back on the Zantac (a double dose actually) since Friday and seems to be doing much better.
Ryman’s labs were great this week. Her prograf level was higher than what they would like so we lowered the does and are going to get it rechecked next week.
We made the decision to keep the picc line until next week so she doesn’t have to get stuck for a blood draw next week.
If everything is good next week she should be able to start only getting blood draws every other week. Which would be amazing!
We have slowly started to take Rye out more and started introducing her to other kiddos. She is very curious of these things that are more her size. We can’t wait until we can be out and about and not have to guard off old ladies who want to squeeze her cheeks.
So Thanksgiving was definitely a day of events but we were able to go to bed saying, let’s just see how she is tomorrow. No sense of urgency, no worries to big not to go to sleep and no worries of climbing ammonia levels. Prior to transplant I’m pretty sure we would have spent that night in the ER. God is so good!
God is so good.
She put herself to sleep jumping!
Dad and a Rye:
Ryman & Friends (missing a few so send them our way if you have pics :)):
For some reason I have this feeling today that I really can’t describe. I think it’s because I am so happy that we are not worried about ammonia levels . One of the things I always think about was when one of the doctors said that we may be able to manage Ryman’s diet but that if we were to turn away and Ryman snuck a piece of turkey on Thanksgiving that we could end up in the ER with high ammonia. Today we have so much to be thankful for.
We have had a crazy year so far but we are so blessed today to be sitting in our house together on Thanksgiving. We are not in the hospital, we are not worried about Rye eating protien or about ammonia levels, we can be happy that Ryman slept 12.5 hours last night and not feel like we need to take her to the ER. We are very thankful for that last one :). I can’t help but think of the two families who are having to have thier first thanksgiving without thier babies. I really can not even begin to think about the emotions they have today. I wish I could wrap my arms around them. So even on this day with an extra fussy teething turkey, I will wrap my arms around her and think of them. I pray that God is giving them peace today.
We hope that everyone is having a great Thanksgiving, we love you all! We are so thankful for you too!
Ryman had labs yesterday and they were so good that she got to come off of the steroid, nystatin and Zantac! Yay, for 3 fewer meds. She has been babbling like crazy and from time to time you’ll hear a mama or baba. Love listening to her babbles. She has definitely been a little less fussy with the less steroids so I am hoping we see a difference in stopping them. I got to go to Chattanooga this last weekend and Ryman got to meet her great great grandma Joyce. It was so good to get to introduce them and see that many generations. We are starting to get closer and closer to Ryman being able to be around other children. We have been a little more adventurous lately and have taken her with us to dinner, IN PUBLIC. She loves looking around at everything and refuses to sleep if we are out if the house.
She is growing so fast. It really does go by too quickly. She will be 7 months old in just a few short days. We have learn so much from her already and I can’t wait to experience the many lessons she will give us in the years to come.
Also I haven’t had a chance to mention yet but Julie had to have surgery and is still recovering. Please pray that she has a speedy recovery. She had a major surgery that was unexpected and has had a few bumps in the road during her recovery. It was so hard not to be there with them. We love you guys.
We are so thankful for the days that are becoming a more manageable life. The craziness is getting less and less. We know there will be more craziness to come but in a weird way we thank God for even getting to experience the craziness. Jeremy is out with Danielle Bradbury on the Brad Paisley tour and he said that Brad’s song ‘Beat this summer’ makes him want to cry. But he really doesn’t think anything will be able to beat how amazing this summer was. There were lots of trials but oh how we have grown through it. We have been able to have so much time with Ryman and were able to be there every step of the way. There were far more laughs, prayers, rejoicing and moments with God than tears or anger this summer. We were introduced to the little girl who has changed us forever. We are stronger, we love harder and we thank God that he has been so faithful. He has shown us that even your greatest fears can become blessings.
I have felt the power of prayer which I may have never known. They covers us is love and allowed GOD to shine through out little girl and through the two children who are Ryman’s donor angels.
Had to throw this one in because I am so proud if Jeremy but I know how tough it is for him to be away from Ryman. Love you babe!
Ryman has been on soy formula since Saturday night and there has been no issue with her tummy or stools. The biopsy was really inconclusive, it did rule out some things but the only thing present were allergy cells. I’m praying that the soy formula has fixed that. We will start reintroducing baby foods on Sunday and will so one at a time to eliminate any food allergies.
You can obviously tell by the lack of post that day to day life is returning to a more normal state. Or we are at least getting into a state of living where drastic things aren’t happening and I do not feel the urge to ask for prayers as much. This doesn’t mean we don’t need them. I think we are just getting more comfortable. I stay pretty busy with working from home and balancing all of Ryman’s feeds and medications. She is still on 15 different ones right now. Big news is that this is her last week on her steroid if her numbers are good on Tuesday! Hoping she is a much happier baby off of them.
We are home! Ryman got discharged late this evening. Last night we found out that they had ordered a CT scan to rule out PTLD. Post-transplant lymphoproliferative disorder, that’s a mouth full. This disorder is a low risk side effect of immunosuppression but very serious and can lead to lymphoma. We do not believe they thought Ryman had PTLD but that they just wanted to cover all their bases and know 100% that it could be taken off the table.
After a long day we finally were told that the scan was negative and we could go home. The biopsy results will actually not be back until Monday. So we left the hospital with no more information than we went into it with. Although we so know that its not PTLD which is nice but I would have never thought that to begin with. We have some ideas as to what we think it could be so we will be implementing mom and dad protocol until we hear back from the doctor on Monday. Thanks Aunt Sara and Uncle Robert for hanging out today and making our baby girl giggle and a big thanks to Aunt Carrie for hanging with us during discharge and seeing us off and Aunt Sarah for bringing me lunch and keeping us company. We are so blessed to have amazing family and friends. Ryman is in great spirits and sleeping soundly in her crib.
Thank you for prayers and love while Ryman was in the hospital again.
That was a lot faster than I expected. Ryman is in recovery. Procedure went great. Upper scope was normal and the lower scope only showed some areas of redness but no major issue that would cause the blood. So they took a biopsy and have it on rush so we should get an answer tomorrow if its a virus or an allergy. She will get to start eating shortly after she is awake for a bit.
I got to keep the pictures if you have ever wondered what the inside of a colon looks like.
It’s been a long day so far. Ryman had to wake up every hour until 4am to eat an ounce of Pedialyte and half a pack of Miralax. She did so great this morning though. Woke up happy and visited with Laura and Shannon who stopped by to help calm what we thought would be a fussy baby. She was suppose to go back at 1pm but at 3 they were just taking her back. That’s 11 hours with nothing in her tummy. She want happy for about an hour but was pretty entertained by the walk down to PACU and the nurses who were awing over her. Everyone loved those cheeks. Jeremy got to come over on his lunch break to hang out too. She should be about half way through the procedure now. I’ll update when we know something. All cultures are still no growth. They are doing an upper and lower scope and will take pictures that I will get to see. Pretty crazy. Love you all. Thanks for the prayers, Ryman was definitely not the crazy starving baby I thought she would be. That one hour if crying made me stop and say a prayer for all those parents and children out there who are hungry. I get to feed Ryman when all this is over. There are so many who have to listen to their children cry of hunger for days, weeks, or even longer. Please stop and say a prayer if you can. It’s such a horrible feeling to listen to your baby cry because they are hungry so I can not imagine if that was because I had no food to give her.
Today has been pretty normal, is it weird that hanging out in the hospital seems normal? Ryman has been pretty tired from staying up late and then not wanting to nap today. She has a pretty bad rash in her bottom that they think is related to what ever is causing the blood. She had more blood today so I am ready for this scope and hopefully an answer to what is causing it. She is on the schedule for 1pm tomorrow. She is having to take just Pedyalite and Miralax to clean out her system. Poor girl doesn’t have much anyway so she is probably going to feel so hungry tomorrow morning. Wish me good luck. Last time Jeremy ran to the car with her while she screamed, this time I will have no where to run. Hoping I can keep her entertained until 1pm. We haven’t gotten a definitive answer when we ask if we will have to stay tomorrow night as well. I’m guessing a lot depends on the results.
Thank you all so much for the prayers and continued love and support. Being in the hospital isn’t as nearly as bad when home is only a few miles away.
Just because your in the hospital doesn’t mean you can’t look cute!
Auntie Laura & Auntie Megan visited today:
Well the count has started back. Tonight will be the 110th night that Ryman will sleep in the hospital. She is okay but she has been having blood in her stool and she hasn’t had much of an appetite for a couple days now. So something to be concerned about. All blood cultures and stool samples have been negative for everything they have checked for. No viruses or GI bugs, no CMV or EBV. Since this has been happening for a few days they want to admit her to try to get her on the schedule for a scope tomorrow or Friday. They will do a biopsy and this should tell us what is causing the blood and hopefully her decreased appetite. Prayers that it is just a food allergy or something that can easily be treated. Love you all.
To say that the last 6 months have been difficult would be a huge understatement. I went back today and read a bunch of the really early post and cried like a baby. If we only knew what was ahead of us. I would not wish this kind of experience on anyone but it’s changed my life. 4 hospitals, 5 ambulance rides, 2 planes, 109 days in the hospital, 2 livers transplants, a ton of amazing doctors and nurses and a community of people taking care of us. Looking at that, all I see is miracles. It’s a miracle that all of this started with an amazing nurse named Wendlyn and a NICU doctor named Costner. We have seen first hand what CPS1 can do to a child and how fast it can do it. Ryman shows NO signs of long term damage. MIRACLE!!! This whole story is filled with the impossibles.
I remember sitting in Vanderbilt and feeling confident on how this story ended. I believed that God was about to take us on a crazy ride and knowing that when it ended we would be able to see the WHY in the question. To be on this side of it and to see how many lives this little girl has changed was the reason. I wish I could tell you every single story that was shared with us. Everyone of them is overwhelming. We thank y’all for sharing them. They fueled us through this journey and reminded us that bigger things were happening. Feel free to email me your story. I’d love to have em for Rye when she gets older. email@example.com
Having the best community ever!!!!
We arrived at home to a clean house, yard taken care of, groceries, nursery decorated with a flashing sign, flowers, new outfits for Rye, diapers, formula, dinners, and 2 clean happy pugs. You have no clue how much those pugs were missed. What amazing friends we have. We knew that before Rye and y’all have continually blown us away.
We are really excited to have started what feels like the next chapter. Today was the 2 month anniversary of Ryman’s first transplant. So amazing!