All in a Day

As I have mentioned, the weekends are particularly lonely around here, a reminder that people are home and we're not. However, we kept surprisingly busy Saturyday. We made the trek to Target where I bought Thatcher this walker. He liked the one in the hospital so much, and I could use another place to set him/contain him. He really likes it for short periods of time. We strolled around outside some, I gave him a bath, he played on the floor, ate...the usual.

I wouldn't call our "usual" boring because Thatcher really keeps me hopping. He eats more than ever so bottles and baby food are always flowing. He plays on blankets on the floor alot and I generally try to wipe his toys down once a day. Not to mention the diapers (which are now super smelly!) Thatch has started sleeping on somewhat of a schedule, mid-morning, afternoon, and going to bed at 9.

We obviously spend time going to doctor's appointments (although we only have 1 this week!) and 1-2 hours/day with medicine, blood pressure taking, and temperature readings. Apparently they don't sell or even make infant bp cuffs, so I bought this handy little wrist cuff that works on Thatcher's arm. It's surprisingly accurate too. I take 3 readings and average them when we can't go to clinic and get readings. We are supposed to take his temperature 2x/day as well. All in a day's work :).

Sunday was much more quiet and gloomy...it is so cloudy here! It does not help the overall mood. I thought I noticed a little dry cough from Thatch too. He's drooling like crazy from teething right now so his hands have been in his mouth more which makes me extra nervous. I'll pray he stays healthy, it's just extra nerve wracking. Normal baby stuff isn't always so normal with him.

No doctor today. Just counting down the days until BJ and Amelia come up this week and for clinic Thursday.

A Merry May

I have been struggling lately with being very homesick - homesick for my family, Amelia, my house, my friends, Tennessee, the weather, my bed...you name it. I don't like to use the blog to complain (I generally call my mom or BJ for that :)), but it hit me the other day that I'm starting to get used to this, which only made me more sad. We use Skype, which is a little challenging with 2 squirmy kids and not the best internet connection, but it helps. BJ is doing his best to keep me updated, but he is a single parent too right now. Like he says, one of the hardest parts of this is being displaced. Yep.

Miss you guys!!

However, we really have not been here that long (6 weeks Tuesday) and don't anticipate being here a whole lot longer. Today is the first day of May - the month I hope we get to come home! I find myself thinking of coming home more and more to the point I feel the need to reign myself back in, not get my hopes too high. This is certainly not over once we get home, but I just know it will be less lonely and easier to handle from home.

I even find I'm already taking his progress for granted! I don't think I could ever forget this experience, but as Thatcher continues to improve I wonder if this will all be a memory one day with our scars as faint reminders...God willing, right?? Thatcher has taught us so much in his first 9 months on this earth, but I certainly don't want his liver transplant to define him. I'm sure he has so much to offer. As he develops, like all babies, I'm getting to know him and his personality. I think more about how this experience affects Thatcher, not just ourselves or "the baby."

It's funny what comments stick with you - some profound, others not, but early on in the process (right after our diagnosis) I was speaking with our pediatrician on the phone and she said, "I don't see why he couldn't climb Mt. Kilamanjaro one day." Ha, over his mother's dead body (I can just hear me asking him if he remembered to pack his medicine), but that hope for the future certainly carries me through most days.

As Thatcher continues to progress - gaining weight, sitting up, scooting and rolling everywhere, pulling his knees under him, I can't help but think every thing is just a little more special with him. He has certainly not had a traditional first year (something else I struggle with at times) but he is certainly not the typical 2nd child either, being overlooked or maybe not celebrating milestones as much. Everything with Thatcher is a milestone! He is just a little miracle. Really, to think they took a part of my liver and put it in him, like a car part, started it up, and it actually worked!! Miraculous.

I guess I have to remind myself sometimes when I'm feeling sorry for us. God has showered us with blessings through this ordeal. He has truly helped us bear this cross. Through the immense support of family and friends and Thatcher's miraculous improvements I am reminded of God's power and mercy. We have come so far. Several things have crossed my path lately reminding me that things could be worse or simply that things were worse and they are now better. There was a time we weren't sure if we would keep our son or what kind of life he would have, nevermind climbing Mt. Kilamanjaro. We still don't know of course, but I find myself dreaming a little bigger for our lives than I once did...HOPE, so important.

In fact, I've started making a list of things I want to do when we get home. I won't share it since it's kind of embarrassing. It's really a to do/shopping list that consists of little things from sewing to running to "wine...lots" but I do think everything will be just a little sweeter once we are home. I'm sure I'll find myself complaining occassionally (I'm human). Thatcher will likely be admitted to the hospital again, especially during this first year, but I'm grateful to the dear Lord for the precious time we have with Thatch and for all he has taught us and will continue to teach us.

9 months

Thatcher is 9 months old today. Sweet boy. We didn't get to dress up and go to church on Easter since Thatch was admitted to the hospital for blood pressure issues so I decided to put him in his little outfit anyway.

We had clinic this morning. Thatcher had a good bp and his weight stayed about the same. It was a relatively uneventful visit...the best kind! I've already seen his lab results online and his liver labs are still looking good. Since this is the case, we only need to go to clinic once next week. Wow, only 1 doctor appointment next Thursday. Honestly, I'm even more excited that this means we are even closer to coming HOME!!

Visit with Amelia last weekend

I had my liver check up at Montefiore hospital yesterday. Pittsburgh is a pretty difficult city to navigate, with alot of one way streets and bridges. It was actually sunny and I got to my appointment with no wrong turns. It felt kind of weird to drive. We stay couped up here since it's a pain to get out and drive. I usually stroll us to the store down the street if possible rather than driving. I will continue to be monitored with lab work once I'm home all the way up to 2 years post surgery. My incision is still a little sore to touch, but I'm completely fine otherwise. Hopefully I won't be going back to Montefiore ever again!

We have an appointment with the renal (kidney) doctor tomorrow to address Thatcher's blood pressure issues. Hopefully Thatcher won't have high blood pressure forever since it is a result of higher immune suppression medications.

9 months old

Monday's Clinic

Back to clinic this morning. It was a good visit and Thatcher's labs are coming down...yay! This means the new medication is doing it's job. We are still watching his blood pressure and have an appointment with the renal (kidney) docs sometime this week since they are the blood pressure experts. Thatch is now 17 pounds, however, we are kind of cheating since the steroid makes them heavier but we'll take it!

The plan is now to continue monitoring his labs. Hopefully they will continue to come down and remain stable for a while. If this is the case, we may get promoted to clinic visits just once a week for a few weeks. We're still hoping to come home in May. Everything of course depends on how Thatcher is doing. Please continue to pray for his healing.

Easter Weekend

I wasn't sure what to title this post - Amelia's Back, Rejection, Link 4 Life, Re-Admitted, or Happy Easter...it's been a little hectic around here since Tuesday! My parents arrived safely with Amelia around lunch on Wednesday. I was SO excited to see them that Tuesday seemed to take forever! Amelia's face was priceless when she came in the door. She was just excited as I was. Nothing is better than a big Amelia hug!!

Amelia in the playroom at Ronald McDonald

It was wonderful to see Amelia and my parents over the weekend. Even though it's a little difficult to parent on a visiting basis and outside of Amelia's familiar surroundings (especially the hospital), I wouldn't trade the time with her. Friday marked 1 month since the transplant and 1 month that we've been away from home. Needless to say, I'm very homesick so a little dose of home was an Easter gift. Mom was a God send! She even got up with Thatcher every night to let me sleep.

My babies!!

We had clinic as usual on Thursday morning, but Thatcher's labs were not good. His liver labs were elevated, indicating the first signs of rejection. They warned us about this, but it was still very hard to hear. I was told that this is expected this close to transplant. The first step to address the elevated liver labs is to begin oral steroids (Prednisone). Unfortunately, a side effect of steroids can be an elevated blood pressure (this is also a potential side effect of his immunosuprression medication Prograf so Thatcher's bp's have been slightly elevated anyway).

In order to monitor his bp, I was told to walk Thatcher to clinic every day to get his blood pressure taken. We began Prednisone Thursday evening and his blood pressure was elevated Friday morning. While it was elevated, I'm almost certain Friday's reading was inaccurate and the nurse should have taken it manually in the arm. Anyway...this reading sent us to the ER from 10am to 6pm until we were FINALLY admitted. Not such a "good" Friday I guess.

Thatch in the hospital

We spent Saturday and today monitoring pressures and trying to find the right bp medication. He also had an ultrasound of his kidneys (which apparently control blood pressure) and liver which both looked good. They got some better bp readings today so we were finally discharged. It looks like the steroid is bringing his liver levels down so they have decreased it already, but he may be on that for a little while. He is now on some blood pressure medication as well.

While this is our first experience with the supposed rejection, I'm sure there will be other episodes. This whole experience is such a roller coaster. I will have to admit, I'm disappointed at how I handled this first round. I was impatient, discouraged, frustrated, sad, etc. I will have to get some thicker skin for this first or several years post transplant. Thatcher is really doing remarkably well. I realize this especially when we are back in the hospital as inpatients. It is so important to remember our blessings.

One HUGE blessing took place on Saturday. Although I wasn't able to attend, the Link 4 Life 5k was a big success with a few hundred people in attendance (wow!!). What an honor for sweet Thatcher!! Words can't really express our gratitude. BJ was there and simply overwhelmed by the turn out and support. We are both so touched. Thatcher is one lucky little boy to have such awesome support from the community, family, and friends. Although it's not enough to say so, thank you to everyone who worked so hard to make the event such a success and thank you to everyone who came out. Know that it is much appreciated and all donations will be used to help heal Thatcher along his transplant journey. We'll remind Thatcher every day of his LONG life just how special he is!! Here are just a few pics my sister snapped.

Unfortunately, we weren't able to make it to church as we had planned today, but the Easter Bunny still visited Pittsburgh :). My parents worked hard to give me as much time with Amelia as possible, which I really appreciated. They left around lunch today and arrived home safely this evening.

Amelia and her Easter basket

We have clinic in the morning. I pray for better labs and patience through this process. I'll keep you posted...

4 weeks

4 weeks ago today Thatcher and I were both in the hospital after having undergone a living-donor liver donation and transplant. Much has taken place in the past few weeks, not to mention the past year. We have come so far and Thatcher is doing remarkably. I attribute his success to the good Lord and lots of prayer. We are doing our part as parents to provide the best care possible, but all along this experience has been out of our hands. I suppose we have all come a long way and continue to pray for peace and healing. Lots of ups and downs, probably more to come, but there is so much to be grateful for. We have been blessed.

Just look at how much better Thatch looks:

Day after transplant

4 days after transplant

4 weeks after transplant

The Weekend

Not a whole lot to report over the weekend. Honestly, I was kind of dreading it and hoped it would pass quickly. It's lonely here, but mostly I'm looking forward to Amelia's visit next week and anxious to see Thatcher's labs tomorrow. We've been here 27 days now, it's been 18 days since I've seen Amelia, and 5 days since BJ left...not that I'm counting!

Thatcher has been a good boy this weekend, resting a little better every day it seems. We finished up the last of the frozen breast milk and are now on formula. I was a little nervous to make this switch in case Thatcher didn't like it or it upset his stomach, but he seems to be doing fine. Through surgery and anesthesia my supply dwindled to such a small amount that we are no longer able to nurse more than once a day. Here are a few pics of the sweet boy:

I've also been attaching his IV medicine every 12 hours, at 9am and 9pm. We have experience with at home health after Thatcher's first surgery. It's actually pretty awesome we can do this at home and don't have to be admitted to the hospital. Here's what his medicine looks like.

Before being dispensed

The medicine ball deflates after about 1 hour

Folks have asked how I'm doing since my surgery. I actually forget about my incision most of the time. I'm just a little sore when I wake up in the morning (not sure how much this has to do with the terrible bed) and the site is still slightly swollen. Other than that, I feel great. I will continue to get lab work up to 2 years post surgery to check my liver levels, but so far everything has been fine. I'm still getting used to seeing the scar in the mirror. I would share a picture, but my belly is not quite as cute as Thatcher's!