“God’s timing is perfect” I have heard it said many times. It didn’t feel that way two Mondays ago (June 3rd) when we were told I needed to be admitted and labor induced 4 weeks early. God’s timing didn’t seem perfect as we came to the realization that this baby was going to be born within a few days of the anniversary of Stella’s passing. My hopes when we had this embryo transferred back in October were that there would be about a month in between these two life changing events, giving each one it’s own time. As it turned out our new baby Joe was born June 6th and the first anniversary of Stella’s passing was on June 8th. Just two days apart. And on top of everything I had pre eclampsia complications which required that I be kept in the hospital four days postpartum. Not being able to go visit Stella on the day of her passing was hard for me to accept, however some really awesome friends were sure to go to the cemetery and visit for us.
All that being said Joe came at the time he was supposed to come. Even though it’s not the time I would have chosen, having him to hold and love on made June 8th a little more bearable. I mourned the loss of Stella and held my new baby with so much love all at the same time. It’s hard to believe that two such polar opposite emotions can exist at the same time….but they can. When I was pregnant with Joe I often wondered how I could love him as much as I loved Stella…but somehow you just do. Joe has already heard stories about Stella and will continue to hear about her. He has brought so much happiness and joy to Jesse and I already but no matter how many babies we have there will never be another Stella and there will never be a time where she is not on our minds. Anniversaries are hard but the reality is there isn’t a day that goes by that we don’t think about her.
So on June 6th 2019 Joe Reid Ledbetter made his way into the world in a way we didn’t expect. I was induced 4 weeks early because of pre eclampsia with severe features they said. We were admitted on Monday June 3rd and the inducing started the next day. When I had Stella I was induced and it took 3 days to get her here. I was expecting that same scenario with Joe. On Thursday the 6th, three days of trying to dilate and get him here it was clear to the doc that was on that day that it wasn’t going to happen. Plus every time I had a contraction his heart rate would drop. So after 3 days I ended up having C-Section. Joe was 5 pounds and 4 ounces and 19.25 inches long. He was 4 weeks early but required no NICU time. We were so blessed that Joe was 100% okay and never left our care. After he was born I was still having pretty high blood pressures and major swelling from my feet up to my hips (part of the pre eclampsia). So it took a few days after having him to get me on the right regimen of blood pressure meds and the swelling continues to get better everyday. We came home Tuesday June 11th. Joe is such a sweet baby he eats poops and sleeps. We and our famalies are totally in love with him. We have been shown so much love through visits, gifts, texts, calls, emails and people bringing meals. We appreciate everyone so so much.
It has been such long time since we have posted anything! Jesse and I have been busy doing things to remember our sweet Stella. Jesse created a beautiful flower garden in our back yard. We also have a new patio where we can sit and enjoy the garden. We set up a trust where we can give a donation yearly to the various organizations we encountered along our journey with Stella. We raised funds for the United Mitochondrial Disease Foundation Energy for Life walk. We also participated in the walk that was in Charlotte. On the same weekend as the walk we met the Kariniemi family from Minnesota who have become dear friends to us and our family. We celebrated Stella’s birthday with family and friends. We helped make and sell squirrel ornaments with the DHS art department. The money raised went to the scholarship set up in Stella’s name at the Davie Community Foundation. We have designed a monument (headstone) for Stella the we think she would’ve liked. It should be installed soon if the weather ever dries out! Our dear friend and co worker Jessica Allen (who led the way on the squirrels) had students set up a table at lunches to spread the word about rare diseases on #rarediseaseday.
We have also been busy preparing our hearts and minds for a new addition to our family. Jesse and I are excited to welcome a baby boy in early July. We wanted to give Stella a sibling and were told our options last year when we learned that Alpers was a genetic disorder. The choices were to get pregnant the regular way and take our chances…one in four pregnancies could result in Alpers. Or we could go through the Invitro Fertilization Process with genetic testing. We chose the IVF option. The process was lengthy, expensive and painful (lots of shots for me) but worth it to know that the baby I am carrying is not affected by our genetic mutation.
The emotional gravity this pregnancy carries is great. A sweet friend sent me a link to a blog post where the mom had lost a child and had other children. She was talking about the word ‘and’…it was okay for her to feel happy for a new child AND still grieve and mourn the loss of her other child all at the same time. It gave me some comfort knowing I and we not the only ones that feel this way. We (our families included) are so excited for this new baby and the chance for Jesse and I to have more children, however the loss of Stella and the hole that it has left in us doesn’t change or get any smaller because of this new baby. We will all have to navigate this new emotional complexity. I’m sure it will include lots of smiles and tears all at the same time.
On June 8th our sweet girl went home to be with Jesus, on June 14th we celebrated her home. We wanted to write this post to share the labor of love that went into our preparations for Stella’s service. If you came to her service you may have seen Stella’s box (as it came to be called). The outside is beautiful and the inside is as well. We didn’t have an open box situation so we wanted to be able to share the beautiful inside. Below are some pictures of Stella’s box that Jesse and I designed and looooooots of people helped bring it to completion. The main side with Stella’s name is something I drew up, it’s really special because it’s my handwriting and my design. If you don’t know, Moana was Stella’s favorite movie, so the waves were done in a Moana style. The other side is a sweet bible verse that we chose. The squirrels are there because that was a nickname we had for Stella. Our dear friend Aaron has access to a CNC machine that engraved the two sides. Jesse’s brother Reuben made the beautiful cross on top which is just perfect. We love the way this all came together and that we could make it so personal for our sweet girl.
The inside of the box was my responsibility which I also had lots of help completing. The fabric I chose is a beautiful collection of fabrics that has the colors I love and mermaids 🙂 I used this same fabric to make Stella a quilt just before she was born. A sweet lady named Kathleen helped me piece together different fabrics from the collection to make the mattress part and two sides of the lining. I embroidered angel wings and a halo on the corner of the little pillow to make it just perfect.
The last touch which made my heart happy was a giant sticker of Moana which fit perfectly on the inside of the lid. The beautiful flowers on top of her box came from Mrs. Emily Blanton of Cana Farms and the lovely Karen Ferrell arranged the flowers. It all came together just so perfectly.
The last thing I want to mention about Stella’s service was the balloon release we did at the grave side. Everyone grabbed a green balloon on their way out of the church. When the ministers had finished their part everyone was told to let go of their balloon and we all stood in silence as we watched this group of green balloons drift up to the sky and eventually out of our sight. It was a very sweet moment that was a time for saying see ya later to our sweet girl. Because it is see ya later. We will be with our baby girl again someday and until then we are going to do our best to make Stella proud to have been our daughter.
Friday morning around 8:15 in the morning we held our sweet baby Stella as she took her last breaths. Our little squirrel is whole again, free of the awful disease that took away her away from us. No matter how much you try to prepare yourself for the moment it can not compare to actually going through it. Stella had a difficult couple of days and her little body was letting us know it was time for her to go home to be with Jesus. Some amazing people at Baptist, the enhanced care team, told us as they coached us through this process that we would know when the time was right to let her go. That time came and we did our best to make sure she was comfortable as she made her way home. Our families were right there with us and Stella the whole time. We have been beyond blessed to have such amazing families, friends, co-workers, and communities that have supported us through this journey that started 6 months ago. We were lucky to have Stella as long as we did, the good Lord could have called her home December 31st 2017, but instead he blessed us with time. Time to spend with Stella, time to tell her how much we love her, time for those that loved her to come visit and play with her. Time for us to see more of her beautiful smiles, look into her beautiful eyes with those looooong eyelashes (that everyone just loved) and hear her sweet voice and her laughter. More time to take care of her, as we gave her baths, watched Moana and Trolls with her, danced around with her, and took naps with her. In hindsight God was giving us the gift of time. We had a very special situation because we knew our time was limited with Stella so we had the chance to not take not a single moment for granted. If that’s one thing we can pass on to other parents it would be to not take a single moment for granted. As much of a cliche as it is. It’s so true. Even when your kid is throwing a tantrum in the grocery store, be thankful you have them. We are thankful for everyone that has reached out to us since the passing of our sweet Stella. We appreciate every bit of it. Arrangements for Stella are in the works. We will post that info when we have it.
Stella came through her procedures like a champ! We came to these procedures because a central line access is crucial to her care moving forward. She also had her G tube changed out for a G/J tube in hopes of reducing the vomiting. The central line called a Broviak is a semi permeant line that is different from the port because the access is on the outside of the skin rather than being just below the skin. Below is a picture of what Stella’s looks like. It looks a little gross right not but the bandage will be changed tomorrow. The Broviak is great for having quick access for IV fluids and for drawing blood for labs. The G/J exchange wasn’t complicated at all. It was kind of just swapping out the G tube and replacing it with a tube that goes to the stomach and then reaches down to the top of the intestine called the jejuna. Basically we can give meds through the G and feeds to the J.
So the days leading up to the procedures Stella had to be pumped up on blood products. Basically Stella’s INR number (the one that indicates clotting factors made by the liver) was too high for any surgeon to do any kind of procedure. Too much of a bleeding risk. So she was given a variety of blood products; plasma, something called cryo and a whole blood transfusion. That little cocktail did what it was supposed to do and got Stella to a place where it was mostly safe to do the procedures.
These past few days have been so awesome for Stella. She has been so alert and smiley. She is chatty and has been awake for really long periods of time. The day of her procedures she slept all day. Today we think she has been experiencing some post procedure discomfort. We will be working on getting her back up to full feeds the next few days with hopes we will get to go home!
Thank you all for your prayers for Stella. God saw her and us through this hump in the road and we are keeping our hearts positive that he will see us home and out of this hospital!
How did we get so lucky? How did we manage to land in a job where the people you work with are real life angels. Especially to us and baby Stella. Those in this picture, and those not in the photo have shown us the love of Christ at every turn. They have visited, called, emailed, brought food, bought shirts, eaten spaghetti, taken over classes when Jesse had to suddenly leave, they’ve taken over art classes I had to leave behind for a semester and given me sick days just to list a few. This whole experience has been so humbling for all of us. Not only has our school supported us in so many ways, so has our entire community. Local community groups, churches, businesses and individuals all have made efforts to support us. There is even a skeet shooting event coming up cleverly named “Pullin’ for Stella”. So many people, those we know and even some we don’t have worked hard to raise money to help support us. Everyone, and I mean everyone that meets Stella falls for her. I don’t know how she does it. She’s brought so much happiness and joy to so many. I want to be more like Stella. I think that’s what she is teaching all of us…leave people happier than when you found ’em. So to all those angels out there in the green shirts, we see you, we love you, we appreciate you. How did we get so lucky?
Coming to Duke was supposed to be a short visit…get to know the team here possibly place the port then be discharged home. It’s funny how God sometimes takes your time table, your plans and stomps them in the dirt. So our plans got stomped in the dirt.
As soon as we got to Duke I immediately missed Brenner. I missed the friendly faces we have come to know over these past 5 months. I missed those large private rooms where I only had to listen to Stella’s monitor beeping. I missed our family being so close. I even missed the heavy duty crib I initially thought was so institutional when I first saw it back in December. Stella was doing okay when we got here, some of her liver numbers showed some failure was starting. She was put on Vitamin K and that was about all the ‘liver specialists’ had to offer Stella in a way of management. They wanted to be clear that Stella was not a candidate for a new liver which we already knew. That’s not why we came here. I guess we came because we needed to hear someone say there isn’t anything to do when the liver starts to fail except to manage symptoms. We needed to know that we did what we could and took her to the best doctors that we could. The GI/liver doc advised to stop chasing the labs(which meant fewer blood draws) since no matter what the lab values showed the management would be the same. So they advised us against placing the port because it was an infection risk and her INR (ability to clot, for which the liver is responsible for) was high, she could have bleeding issues from the procedure.
Even though we know the liver is failing we were hopeful that the state of failure would kind of pause and not get worse. Through our stay Stella’s little belly would become distended and get kind of firm but still soft if that makes sense. We thought it was because of her feeds and maybe it was, like she had had too much and her belly was sticking out.
She did well through the weekend and we were working on getting her feeds under control which she continued to vomit. Since Duke wasn’t doing anything Brenner couldn’t we wanted to be transferred back to Brenner where they could continue to work on the feeding situation. We were set to head back Tuesday (yesterday) when Stella started showing signs of another metabolic crisis.
On Tuesday morning she was pretty out of it (which is a sign of a crisis) and the vomiting was increasing. Our nurse came in to check on her and took a blood pressure which was very low, she called for the rapid response team from the PICU. They came and assessed Stella and determined she needed to be in the PICU. She had no IV and she needed IV fluids…her blood sugar had dropped to 40. Since all her other sites were shot and she still doesn’t have the port they were able to get access in her neck. About 8 hours later the IV had come out of the vein so a central line had to be placed in her groin area.
This morning Stella’s little belly looked like a basketball. She has ascites which is where the fluid collects in the abdomen where it shouldn’t be causing the belly to distend, another symptom of liver failure. We are hoping to get her more comfortable… the PICU doc assured me that while she can’t do much about the whole picture she can do something about the ascites. She is being given albumin and lasix to help get the fluid off. So when we think she’s comfortable and has peed a lot they will transfer us back to Brenner where we will go to the PICU there.
I have cried a lot. We know that all of this isn’t good. We don’t know what or how long to expect. We do know that we love her more than I could begin to describe with words. And we will love on her and be right by her side till Jesus calls her home, be that in two days or two years. Stella has probably experienced more love by more people than most humans do their whole lives. I think that’s what most people search for… to be loved, really loved. So in those terms Stella has had quite the life!
So even though our plans got stomped in the dirt there is a positive in all of this. A lot of Jesse’s extended family lives near the Raleigh area. Most of them haven’t seen Stella since Christmas, right before she got sick. Most of those family members got to come see Stella which is a blessing! We also met some really awesome docs and nurses that took care of Stella while we were here. One or two we can call on if needed when we get back home.
It has been so long since I’ve posted anything about Stella! We have been busy busy with managing her. We had a good stretch where Stella was doing fantastic! We have since experienced two hospital stays, the second one we are still in. The first ED visit was due to dehydration and constipation which caused her to experience a metabolic flair which means she was all out of wack, really sleepy and not responding to much. We have had trouble with vomiting for a couple months as well. We spent 6 days at Brenner getting her chemistries back under control, she had a long term EEG, and we were taken off the keto diet. A lot of changes happened during this stay but Stella bounced back to her baseline pretty quickly. When we left she was awake all day, responsive, smiling and jabbering. Every time we have been to the hospital our Peds team has been in touch with Dr. Parikh in Cleveland and being very careful in the way they manage her, to which we are so thankful!
We were home about two weeks when I noticed she was starting to decline in similar ways as before, sleepy and not real responsive. We took her to the ED at Brenner last Friday (5-11) where her chemistries were again out of wack. She was given an IV that helped correct some of those lab values. It took Stella a bit longer to bounce back this time but she has gotten back to her self. This time Stella’s liver obviously is showing signs of some dysfunction. Our team at Brenner felt like Stella was going to be best served at Duke because they have a metabolic team that deals with kids that have mitochondrial problems and there is a GI doc that specializes in the liver. So here we are…today we were given a ride by the Duke life flight crew in their big blue rig an hour and a half or so down the road to Duke. Stella is stable and okay this was just a way to get in with this team and see all the specialists we need to see in a fairly easy way. We absolutely love the team at Brenner and feel so comfortable every time we have to go. Coming to Duke is out of our comfort zone but we hope and pray that this is going to be what’s best for her.
While we are here Stella is going to have a port placed. She is EXTREMELY hard to get blood from or to start an IV. She has bee stuck at least 15 times just since last Friday. She has hospital stays in her future where routine blood work is going to be required so this seems the most compassionate thing to do for her. The procedure is fairly common and simple. However putting her under is always a scare thing given ALL her issues.
So if we were to ask for anything we would ask for prayers that this procedure goes well and that we have made the right decision for her. I don’t know exactly when it will be but will be soon. We also pray that the dysfunction in her liver (which we know is inevitable with Alpers) will hold where it is and not get any worse for a long long time. On a good note Stella got to see her Aunt Libby who works at Duke Eye Center! She hasn’t seen her since Christmas! Thank you for your prayers, they mean the world to us!
Our trip to Cleveland Clinic was a positive one. The reason we went was to speak with some doctors who have lots of experience with Alpers. We found that in the Neurologist we saw, Dr. Parikh. He was very knowledgable about mitochondrial disorders and was able to share a lot of useful information. He made some changes to some of her medications and suggested some other specialists that should be on Stella’s case.
While in Cleveland we stayed at the Ronal McDonald house which was amazing. The facility was really nice, like a hotel. We also drove around Cleveland to explore and see what the city has. We drove to the water to see Lake Erie.
Stella did really well on the trip. She had to ride in the car for a long time which she didn’t love but she did really well. Her vomiting problem seems to be improving. She did feel the need to christen our Ronald McDonald house with her vomit the night we got there, but there hasn’t been anymore since.
I suspect we will go to Cleveland once a year to visit with the doctors there while we keep our routine visits with our docs here in Winston.
Welcome to our website about Stella. We’ll share details about our journey with Stella and Alpers here.