So this is the story of my adorable niece, Jillian Bea Pierce. She lives in Pittsburgh.... and she's going to be a Pirates fan, I'm sure. She was due to make her appearance in this world during the first week of April. Instead, Mom's body had different ideas and she came early..... like January 29th early. Everything during those first few days were touch and go..... mommy Holli was sick, daddy David was scared, brothers Grayson and Archer were confused and Baby Jilly was TINY. Here is our first view of the little peanut.
That is her dad's hand. She weighed 2 pounds 10 ounces. After some time, they both stabilized and the full magnitude of the situation began to unfold. Besides being incredibly premature, Jilly has a cleft palate: something that her parents would have freaked out about under normal circumstances, but when placed in the context of this situation, seemed like something trivial. She started to grow and this little family started their hospital commute ritual. They live 45 minutes from the hospital.... the boys were not allowed in the NICU, and although they had a play room at the hospital, it still made for some rough times. These pictures were taken on my trip to Pittsburgh in March.
I am including screen shots of many of the updates that we have received about Jilly and her struggles and care; because her parents have the most complete information about the situation, and at some point, I hope this post serves to all of our family as a reminder that #wecandohardthings #wegotthis #missjillybean #prayersforjilly. I apologize for the lack of uniformity in the size of posts and texts.... I could investigate how to fix it, but I'm guessing that no one really cares THAT much.... it just bugs me visually, so I apologize if it bugs you too.
So this is about the time that Allie, Will and I headed back to Pittsburgh to play with the boys and help out a bit. Will has missed Grayson since he moved and Allie and I have really missed Aunt Holli. Here we are on the plane getting ready to fly.
While we were there, we did a lot of fun things. We spent a lot of time playing outside and playing superheroes. We went to the Carnegie Science Center..... we also went to dinner and rode the Duquesne Incline with Matt's friend Dave. Love doing things the locals love.
On our last night in Pittsburgh, Allie and I took Holli out for a pedicure and dinner at Olive Garden. It was a much needed break to pamper a mom who was burning the candle at both ends. I was so glad we went. Almost as soon as we got back home, things went nuts.
So here's where I come in. Baby Jilly is now at Children's Hospital and we are all feeling so happy that she is being taken care of by doctors and staff who are truly experts in this field. Dave and Holli have been so blessed by such wonderful medical care and local support. Thank goodness David has a sympathetic employer. By the time they left the hospital that Holli delivered in and transferred to Children's, Jilly's medical bills were upwards of $30,000. She has now been at Children's for two months and there is a morbid curiosity about what the final tally will be. The bottom line is that we as a family are incredibly grateful for the care and treatment that Jilly has been able to receive. And what does any smarty pants do when they want to stay on peoples good side? They suck up! That's me, the queen of sucking up! Okay, and I also wanted to try and turn this into an experience to teach my kids about finding ways to express gratitude for blessings and to try and look for ways to serve others.
At our local children's hospital (Primary Children's Medical Center, which is fantastic) they have lots of opportunities for families and groups to provide service; many small projects. Well in Pittsburgh, they don't mess around. Their donation page is filled with ways to donate like endowments, car donations, signing over stocks.... lots of stuff that wasn't going to work for us. But, at the bottom of the list, there was a category for "in-kind donations."
So, we decided to sponsor a Toy & Gift Drive in honor of Jilly. As a family, it was something we could do from Utah to "pay it forward." Around this time, as it became evident that Jilly was going to be at Children's for a while, I made plans to fly back again to help out. Now the plan included bringing gifts. I was excited. And immediately overwhelmed. The response that I got from people in my life, people that don't know Dave & Holli, or Jilly..... but they knew me and my family and graciously donated toys, craft supplies, books and money.... things I could take back to thank the staff of the hospital for taking care of Jilly and to hopefully bless the lives of the families who would follow ours at this fantastic hospital.
Jilly was undergoing lots of tests and procedures to try and figure out what it was that was keeping her from gaining weight and was wreaking havoc on her breathing and eating. The doctors did a sleep endoscopy and determined that she was "complicated."
So things moved forward, and all of the lovely people in my life kept the donations coming. Jilly had her first cleft repair on Tuesday, April 12 and then was prepped for her jaw distraction on Friday the 15th. You can read about what a jaw distraction surgery is, here. Jaw Distraction Surgery.
Here is one of the pictures we got right after her surgery; you can see the little prongs "distractors" behind her ears. These are turned by 1 mm one to two times a day to lengthen her jaw, which will help with her breathing and eating problems. She is heavily sedated in this picture so that she will not try and herself.
So what did we do? We prayed. And we cried. And we prayed some more. So hard to see all the progress she had made wiped out in a few hours. We thought that our worst fears were coming true. Thankfully, we felt comfort knowing that Holli's parents were back there with them to help with the boys and to provide that reality check and pep talk that Dave and Holli needed. As I have gotten older and become a parent myself, I have watched my parents "go soft" as grandparents. It's a wonderful thing to see your parents love your kids and dote on them..... but sometimes you wonder, "have you completely forgotten what it is like to deal with all of this crap?" And most of the time, I think they have, thankfully. It's nice that the kids can be in cahoots with the grandparents. But there are times, a few times I can count on one hand, that something will happen, and Grandma becomes Mom again. She steps in and takes over and refuses to put up with your kids' crap and totally validates my role as a mother. Parents provide a touch point for their children; always. And knowing at the time, and hearing later on, that Pam and Paul were there to help lead their children through this hard time was truly a blessing for all of us. I felt so grateful that they weren't alone in this.
We kept getting updates throughout the day on Sunday. And we kept a prayer in our hearts all day long.
Okay, Pam and Paul are home on Tuesday, and Thursday morning I am scheduled to be on a plane. With A LOT of stuff.
Matt and I were crisscrossing the country that day... he was flying home from Kansas City and I was flying to Pittsburgh. We both had layovers in Minneapolis..... but they were 6 hours apart. We took pictures that said "I was here."
A few hours later I was back in Pittsburgh and holding sweet little Jilly.
Friday, the boys and I hung out at home while Dave & Holli were at the hospital. We also took advantage of the time to have an epic dinner at Chick-fil-A and then we took our donated funds, and we shopped.
So much fun; and despite the fact that it is hard for little guys to understand that they are not the recipients of all these toys, the boys did fantastic.
Saturday, April 23, was awesome. Holli and I went to the hospital and visited Jilly. And then that night, the Pierce's partied; some together, some apart. Holli and I made tissue decorations for Jilly's room. Super fun and so exciting because it was practice for decorations for Erin's party this weekend.
But more than that, in similitude of our pedicure and dinner with Holli during our last trip, we arranged for David to play video games with some of the brothers on Xbox Live. I ordered pizza for every house and we made arrangements for the kids to be out of the way for the night. Here are some fun pics of that night.
It was some much needed "guy time." And then the fun focus of the trip; delivering all of the toys that were donated or purchased for the hospital. The boys donned their Superman shirts, because they are super duper.
After the photo op, we packed everything up and headed to the hospital. I wish I had been able to take a picture of the staff members at the hospital..... they were amazed by the generosity of so many of you (as was I.) So many of you who don't know Dave and Holli and yet, you were willing to help me bless the lives of so many. When we arrived with the toys, the Child Life Specialist let the boys pick where they wanted the toys to go... that was easy; 8th floor playroom where they have spent so much time over the last two months. It was so awesome to see the toys unloaded and stocked in the playroom.
With this mission completed, my trip is almost over. All that was left was to fly home the next day. Well, you know me; I can't make it easy. On a whim (although I think I'm pretty awesome for thinking of it) I changed my flight home to depart from Pittsburgh to Baltimore; which is where Matt was flying into that day. Jumped in the car and drove 4 1/2 hours to surprise my man! And he was surprised. Or more like stunned. It was fun to sit and talk for an hour or so before he headed off to work and I headed back home to the kiddos.
And finally, I'm back home. But I have a great update. Jilly has learned to rock the bottle.
Then Jilly had to have a swallow study to make sure that the milk was going where it was supposed to and that she didn't aspirate. Well, here's the news.
And then, sweet Jilly got her distractors clipped. After 3-4 months, she'll go back in for a surgery to remove the hardware.
Feeding tube is out and Jilly is all smiles. She is doing so well. All she has to do is put on some weight and she is home free. Holli has been at the hospital full-time since Friday and Grandma Pierce flew out Sunday to take care of the boys. Holli's update the other day made me smile.
Heading to bed last night, prayer in my heart and fingers crossed, Holli sent this picture of Jilly in her car seat for the test. She has to be able to sit in it for 12 hours without struggling to breathe.
Waiting to hear how the whole experience ended up last night. I'm assuming it's good. Hopefully she's headed home today. How awesome will that be? Holli has this whole three kids thing figured out.
So grateful for this little family. Grateful that they have been taken care of and watched over by the Lord. I am grateful for awesome friends and neighbors who love my people. And I'm grateful that through all of this, my kids and I have learned a bit and have grown closer. Life is good, and we are blessed. Have faith! It will be alright in the end. One of my favorite thoughts is "If it's not alright, it's not the end." Think about that! Have a great day.
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