Ruthie Grace: Part 2

Coming out of anesthesia, in pain, and super foggy, my first question was "How's Ruthie?" I knew the plan was Jimmy would get to see her immediately after she was taken out of the surgery room. So, I hoped he would have an update for me. He did. He let me know she was doing okay, made it through the surgery, didn't have to have ECMO (by-pass breathing mechanism- not a good sign), they had gotten the mass out, she had some right lung after all and it was working along with a semi-healthy left lung. The best news possible. She was still in critical condition and would be for weeks but our best case scenario was happening. In my fog, I was so relieved. But continued to ask questions, pretty much the same ones over and over.

Me: My recovery has gone quite well. I've had some pain, but no more than would be expected after a pretty intense surgery. They keep telling me... take it easy... you had more than the average delivery. I really can't brag on God enough when it comes to how He's provided nurses and doctors. They have been the most attentive, knowledgeable, sweet, confident people and willing to explain in as much detail as we can understand. This goes for my doctors and nurses as well as Ruthie's. Transparently, the hardest part of the recovery was not seeing her and now not holding her. I am feeling a bit disconnected from her. It is getting much much better every day as I get to sit by her and hold her hand. But, in the beginning, I didn't feel like "mommy" yet. I wasn't caring for her. I hadn't touched her. Mentally, it was a rough first few days. I prayed a lot and continue to hand this over to God. I can't tell you how good it is for me to be next to her, be given updates on her care, and other little things. (I get to put lip balm on her lips so they don't get dry and I got to pick out her NICU sheets.) And like I said.. This gets better every day.

Ruthie: Praise be to our Father! My cup runneth over. She is the most amazing thing I have ever seen. I know you believe me when I say she is so incredibly beautiful. Like no lie, the prettiest baby ever. I know that my eyes may not be the most unbiased eyes, but honestly, she's pretty. I would love for you guys to see a picture but she's not at her best right now. There's lots of machines and tubes attached everywhere in the way. But, once those start to disappear, we will flood this blog with pictures of our little blessing. She's got dark hair, tan skin, jimmy's chin and nose, my ears, and we're still waiting for her eyes to open to get a good look at them. Since her arrival, she's had lots of medicines, machines, and whatnot. After surgery/delivery (the surgery was first, technically), her lungs did well, her heart was good, she had some problems with swelling, was on blood pressure medicines, she was hooked up to a machine to help her breath called an oscillator (gave her lots of short, shallow breaths), she was on lots of medicines. The NICU is critical care for infants. They have told us that her recovery will be a climb but to expect a few bumps along the way. Her first week has been just that.... Over all she's done beautifully. Better than expected. But we have had a few rough spots. But the good updates outweigh the bad ones. As of today, she has been weened off the oscillator and is now on a regular ventilator which helps her take her own breaths and does it for her when she's tired, she's only on a few medicines helping with pain, sedation, nutrition (IV nutrition so far- we'll work on feeding later), and breathing, she's not opening her eyes yet and still has lots of tubes, her incision is healing well, her lungs are doing good, and the doctors are slowly removing things every day. She's definitely an over-achiever. Doing wonderfully. Our next landmark will be getting her chest tube out (draining her wound) and weening her off the ventilator completely (so she can breath on her own). We will get to hold her after these things. At least, this is the plan. Again, there is no time-line. She has to take things slowly and recover. But, we are looking forward to these steps.

Her doctors and nurses keep saying how amazed they are by her. We keep telling them about the ARMY of people she has praying for her. I'm not sure they get it. Since she's doing so well, please continue to pray for her. She is so strong and is certainly a fighter, but I give God the glory. He's hearing and answering our prayers in so many ways. God is meeting us in the big ways and in the small. We've been given a place to stay a 5 minute walk from Ruthie's bedside. We have been blessed in so many ways. It's ridiculous. We praise HIM for all that he is providing and his favor. God has chosen me to be this girl's mother. I'm not sure why. I'm certainly not anything special. But, boy, I am honored by his confidence in me.

Ruthie Grace: part 1

Let all praise and honor be to God. He is great and worthy of ALL PRAISE. Not just because of His grace in our situation, but simply because He is our great God.

Second, we are humbled by the thousands of people all around the world that have rallied around our family in prayer. It is truly unbelievable. We are not confused to think that we deserve this. We are eternally grateful. We love you all. Ruthie loves you too, but she can’t tell you that because she’s just a baby.

We arrived at Children’s Hospital in Cincinnati, OH at 5am. Kim was processed and placed in the room she is currently recovering in. Soon, we met with all the surgical staff. Well, not all. Later we were told there were upwards of 20 people in the surgery at certain times. Crazy. Carol and I said our sweet goodbyes to Kim and she went back for surgery around 8am.

Carol and I moved to the waiting room around 8:30am and met up with my sister Susan and brother-in-law Greg. Don came shortly after and we began drinking coffee and having hours of nervous conversation. Greg and Susan constantly reassured me, Don and Carol quietly listened remaining strong and optimistic, and I was kind of an excited nervous mess.

Ms. Judy (super nurse), would come periodically into the waiting room and give us updates. “Kim is under anesthesia now” or “The surgeon has made the first incision”, she would say. She was so great to do that. Each time she came out, we waited with baited breath as each update got us closer to our beautiful baby.

At about 12:15, Ms. Judy came out and changed our lives forever. She told us at 12:01pm at little baby named Ruthie Grace Thorpe was born. She showed us pictures she had taken with Carol’s camera. We were all amazed. At this point, I was hit with the amazing reality that our daughter was not only real, but very much ALIVE.

We were able to meet Ruthie for the first time by the elevators as she was being wheeled to the NICU. She was so beautiful to my eyes. It was bittersweet though, because she had to leave so quickly.

Soon thereafter we had a consultation with the main surgeons who had performed the operation. They filled us in on all the particulars. My head was still reeling. One of the Drs. made the point that it was still not clear what type of tumor it was. It would have to be sent of to testing. In a moment of clarity I spoke up and said, “Let me put it to you this way, if robbers broke into my house and put my family in danger, I called the cops and they run him off and put him in jail...I don’t need to know his name”. We all erupted with laughter and I finished by saying, “but if I saw him on the street, I would beat him to death with a bat”.

I finally got to see Kim as she was coming around from the anesthesia. She was in a lot of pain, but we got to hold hands and share a sweet moment together. Carol and Don got to see her too. There are just some things a husband can’t give his wife, but a Mom and Dad was all that she needed. We were all so happy that Kim was OK. We all exhaled a sigh of relief.

Cataloging these days

Jimmy, Mom, and I have been here (in the hospital) since Thursday. So far, the days been pretty uneventful. Mom and Jimmy have been traveling back and forth from here to the hotel/extended stay place we have for a while. I have to have special permission from my doctor to leave the floor. So, I've been walking the halls and visiting the nurses station from time to time.


I've been getting steroid treatments to grow Ruthie's lungs and hopefully shrink this mass on her right lung. They did find normal lung tissue on the right side. Not much, but enough to be promising. The left one appears to be functional but squished a bunch. So, when they remove the mass during the surgery they will be slowly unsquishing everything else.

Since we've been here, we've met lots of doctors and I must say I am very impressed with their knowledge and confidence. I love my doctors and midwife from Cookeville and Chattanooga...but it is comforting to be learning to love people here too. They are very smart and super involved in each case that they see. We had a consultation meeting with the team of doctors (6 doctors; 2 hi-risk OBs, 2 neonatologists, 2 pediatric surgeons, and a host of nurses) who would be with Ruthie and I on our delivery/surgery day. It was a 2 and 1/2 hour meeting where they explained everything thoroughly and explained the risk. We met again on Friday to sign all the consent forms and meet a few more doctors. The technical diagnosis for Ruthie is still up in the air. They think it is something called a CCAM/CPAM mass. But there is some friendly disagreement among our doctors on the actual diagnosis. They haven't really presented another option that is more likely but the course of treatment is the same for any other type of lung mass. If it is a CPAM, it's the largest one they've seen and it didn't respond to steroids the way it supposed to. (That's why I'm getting another round this weekend.) We're pretty sure the surgery is going down on Tuesday. We'll know for sure after some tests on Monday. But all the consent forms are signed and ready for a Tuesday surgery. I'm ready for it. I think Ruthie is too.

I know you must have lots of questions. I know we do. But to be honest, the answer to most of them is "We don't know." The lung mass/delivery/surgery are all so new and cutting edge that there aren't a ton of statistics on it. They see maybe 10-12 per year here at this hospital and it's by far the most in the country. Every baby responds differently and requires different treatment. Sure, Ruthie's mass is the biggest they've seen but she's almost full term and isn't showing signs of stress. Most babies with this type of mass have other problems (heart or diaphragm). They're masses are smaller but the babies are smaller too. So, if you have questions and I haven't addressed it in the blog, you may assume the answer is "We don't know."

Jimmy was able to pray with/over our doctors and nurses in our meeting on Friday. They were open to it. I think they were honored by it and hopefully they know that we and all of you will be continuing to pray for them. We were talking after the meeting with one of the surgeons. We were talking about pride in doctors and he said pediatrics is pretty different from other specialties. He said.. "It's easy to put your pride aside and ask for others opinions even if you think you are right... because it's for the health of a baby. We all come together around a baby." I like this guy. He and the whole team are a blessing to us.

We are doing well and keeping our heads and hearts up. Thanks for your prayers over the course of the week. I or Jimmy will keep you updated.

Too much to tell!

We've had such a full week that it will be difficult to get everything here on the blog. Here's one thing I know; God is in control and Ruthie, Jimmy and I are at the top of his list!

I guess I could start with where I am... I'm at Univeristy hospital in Cincinnati. We are across the street (literally) from Cincinnati Children's Hospital. On Wednesday, we came up here and had several tests; an MRI, in depth ultrasound, and a fetal echo. After a day of testing, we met with a room full of experts. They explained what they saw and presented a couple of options of treatment. The options are endless and none of them are free of risk. So, let me tell you what we've decided.

Ruthie and I will be delivering via an "Exit Procdure." This is surgery for her and for me. Basically, they will put me to sleep and open me up similar to a c-section. They will remove her from me but leave me connected to her through the umbilical chord. She will then have her mass removed while still connected to me. I will be acting as her life support while she has the surgery. After she has the surgery, they will secure her breathing and then, officially deliver her (cut the chord). They'll sew me up and wake me up. This is a bigger risk for me but will give Ruthie the best shot for her surgery. It's about a 6 hour surgery. Obviously, pray for Ruthie and me... but please also keep Jimmy in your prayers. I can't imagine how worried he must be. I would be a blubbery mess if it were him in an operating room for that long.

Well, if that wasn't enough, they also gave us our first information on how Ruthie will do after she is born. There's lots of maybes, could be's, and we'll sees. Basically, imagine the largest spectrum; the very best to the very worst. I'm trying not to think about the possibilities. I'm just staying positive and am excited about this precious thing that is kicking the time out of me RIGHT NOW. I thank God for every minute that she is with me. I have a friend who gave me that advice. Treasure every minute you have with her. That's what i'm doing right now. I know it is going to be a long journey. But I am excited about the next step. I know God is the Giver of Life and I know He's got our backs. No matter what happens. They did give us an estimate on how long she will be in the NICU.... 6 weeks to 12 months. Yeah. You read that right. possibly 12 months of NICU living. oh dear. I guess I'll just have to become a Bengals fan.

Again, this is just a synopsis of what we've heard over the last couple of days. a.) there really is too much to write. b.) I don't even want to repeat some of the negative things they've 'prepared' us for.

When is this big show happening?? With a CCam mass (the type they think it is... that's another story for another time.), they've seen moms deliver on average at 35 and 1/2 weeks. That's Monday for me. Not only does she have a CCam, but it's the largest one they've ever seen. I also have excess fluid that causes preterm labor. I was admitted today for observation and in anticipation this thing would go down near the beginning of next week. But there's no official schedule.

Thank you so very much for the prayers I know you are sending up on our behalf. I can feel it. No lie.... as far as physically, I feel okay aside from the occasional contraction... mentally, I'm focusing on the positive and anticipating the best outcome. I mean really.... at 20 weeks, things were pretty bleak. Look at her now! she's rocking every test! she's looks perfect. They did say... with this size of mass, she should be this or she should look like this. but she's not showing any signs of stress. Go Team! Seriously, thanks for the prayers and keep em' coming!! We love you so much and can't express how much love we feel from you!