CHOC CHILDREN’S FOUNDATION EVENT
Last month, I was asked to speak at a fund raising event for CHOC. At first, when I was asked to speak, the things I would need to share felt deeply personal and I wasn’t sure if I’d be able to do it. But I knew that I wanted to try, because I am so grateful for the start our girls were given. Blake and I knew from the beginning of our time in the NICU that once we got our feet under us, we eventually wanted to start finding ways to give back. We also want to teach Romy and Piper to do the same as they get older.
SHARING OUR STORY
So now here I am again, sharing more of my story with you all on the internet ;). I’m sharing for the same reason I’ve been talking about the girls from the beginning – because if there is someone else out there who can find hope or comfort in it than I want them to find it. But now also because if there is anyone who wants to give to CHOC, I wanted to have a way for you to do it both in your name and in Romy and Piper’s if that’s something you want to do!
The event I spoke at was at the private residence of a really amazing person – Laguna local Cary Hyden. His own children were born extremely premature, and he was so gracious to host the beautiful evening. There were several people from CHOC present, but most exciting for us was that we got to see a couple of the NICU doctors who played a key role in Romy and Piper’s early care.
WHAT I SPOKE ABOUT
Since a lot of you know our general background I’ll skip over how we found out we were having twins, but you can find that story here. Below are some excerpts from the speech I gave, starting with (the beginning of) the end of my pregnancy.
…At our 12 week ultrasound the tech guessed that we were having two girls, and at 18 weeks our anatomy scan confirmed it. They kept a close eye on the babies, who seemed to be growing and healthy, and I had only minor complications throughout the first two trimesters. Heading in to my 28-week check-up I felt fine – just normal “I’m 28 weeks pregnant with twins” symptoms, but they checked me and found out I was actually in pre-term labor. My doctor sent me straight to Hoag Hospital, where they slowed my labor and put me on strict hospital bedrest indefinitely until the babies came.It was during those early days on bedrest when I first started to become familiar with CHOC and it’s NICU program. One of the NICU doctors came to my room and talked to me regularly. He explained to me what my babies would be like if they came this early and what type of support they would likely need. This is when I first learned about Hoag’s access to CHOC – both its doctors and its facilities. Before the babies were even born, it gave me comfort to know that we had that available to us.
The girls were born at 30 weeks in a (very quick) emergency C-Section, with one of the CHOC doctors present to receive the babies…The doctors let me get a glimpse of the babies in their isolettes before they wheeled them off to the NICU, and so began our NICU experience. It was scary and hard to see the babies like that, but it helped so much that my expectations had been set going in to it. We officially named the babies that first night. Baby A became Romy Jean and Baby B became Piper James.
The hardest day for me was the day I was discharged from the hospital without the babies. Blake could see how much I was struggling, and when we went home to drop off my things he put together a collage to hang by the girls isolettes – pictures of Blake and I, their nursery waiting for them, our dog at home, and individual cards my sister had written them. It was little things like this that helped so much – seeing that a favorite nurse was working, the doctors remembering every little thing about the girls without looking at their chart, or seeing Blake bring coffee to the other NICU dads.
Romy needed to be on oxygen, but she stayed fairly stable in the beginning as her lungs got stronger. Piper had a rougher go. Both of her lungs collapsed so she had to have chest tubes, she was intubated and on a ventilator, and had to have more medications to keep her comfortable. As scary as it was to see Piper like this, I felt so much confidence in the people taking care of her. There was one day where they had been trying to get a PICC line in Piper, and it wasn’t working. We weren’t allowed to go into the NICU that whole day while they were working on her. When we were finally able to go in, we found out that one of her nurses literally hadn’t sat down the entire day – she’d been standing next to Piper and never left her side. I can hardly describe the comfort this brought me, knowing that when I couldn’t be standing by Piper somebody else was there loving her.
On a night soon after this, Piper’s lungs declined again. A CHOC doctor on duty immediately took X-rays of Piper’s lungs to study them with a team of other CHOC doctors. She quickly re-intubated Piper and considered transferring her to CHOC right then. Ultimately, they decided to give her some time, and by the next morning she was more stable and her lungs grew stronger and stronger after that. On that terrifying night, though, it was such a comfort to know that CHOC was just a quick ambulance ride away should she need surgery or further intervention, and that we had such clear communication between the two hospitals because of the CHOC doctors present at Hoag.
That was our lowest, scariest point in the NICU, and from there things seemed to steadily progress. Next to the pieces of home we hung by the girls’ isolettes hung a little NICU checklist of things they needed to complete before they went home. We watched the check marks fill up as the girls hit their milestones and passed their tests with flying colors. Soon, the last thing they needed to check off the list was bottle feeding.
In order to leave the NICU, the babies have to take all of their required feedings through a bottle for 48 hours. That’s 16 bottles in a row. I remember sitting there trying to feed them, willing Romy and Piper to please just finish 10 more CCs. We watched other babies and their parents come and go, but the girls’ progress was slow.
At first, we all thought that for sure the babies would be home by Halloween. But Romy and Piper weren’t ready yet, so we got them little costumes from Build-a-Bear and dressed them up in the NICU. We even surprised the doctors during rounds one morning by dressing the babies as them. We put them in little scrubs with name tags and medical masks.
When Halloween came and went, we thought surely the babies would be home by Thanksgiving. So we decided to host my entire family… Yes, I know that sounds crazy. But in my head, I had this dream of a perfect Thanksgiving, snuggling babies around a beautiful dinner. But Thanksgiving came and the girls still hadn’t passed their bottle milestone. I made my first turkey, but went to see the girls while it was in the oven. At this point, I started to wonder if the girls could make it home by Christmas. I can tell you I’ve never wanted anything for Christmas more.
This is when Dr. Bixby stepped in and ordered the transfer to CHOC. Dr. Bixby is one of the doctors that goes back and forth between CHOC and Hoag, and she’s known Romy and Piper from birth. We had a long talk about the girls – about what would be available to them at CHOC. In that moment, I felt like Dr. Bixby was talking to me both as a highly skilled Neonatologist and as a Mother who knew I needed my babies to come home.
She told us about the twin room that would be available to us, and the feeding team that specialized in exactly what the girls were struggling with. She scheduled the transfer for a day that she would be at CHOC to receive us.
Dr. Bixby knew how hard it would be for us to leave Hoag—She knew the nurses and doctors there had become family to us, and that we had built a little home there with a routine– we’d even become friends with the security guard who would take our parking ticket. So having a familiar face at CHOC and someone to walk us through the changes meant the world to us.
We made the transfer the day after Thanksgiving. As the girls were wheeled out in the transport isolettes to the ambulance, I realized it was the first time they’d seen the sun. We’d been cooped up in the hospital for so long, seeing their little faces in the sunlight for the first time was incredibly meaningful.
When we got to CHOC, they were received so smoothly. And right when they got settled in, as promised, the feeding specialist came to see them. I instantly knew that this specialist was going to be able to help our girls – watching her assess them and interact with them gave me so much hope. And under her care, along with the amazing nurses and doctors advocating for the girls, we watched them steadily eat more and more.
It was so nice to be in the private twin room. When our nurse wasn’t caring for the girls, she’d sit at a desk outside the room. This meant that for the very first time, we were able to be alone in a room as a family. That time together was so special for us. Also for the first time, I had the option to stay overnight with the girls. We felt a renewed sense of hope and determination – right off the bat we could tell that these people weren’t messing around, and this was our best chance to get home as soon as possible. CHOC was like a breath of fresh air.
Throughout our whole NICU stay, we were told that twins never go home on the same day. Romy and Piper and their feeding specialist had other plans, though, because on December 7th, when they were exactly 3 months old, they were ready to come home together. The doctor that ordered the discharge was the same doctor with us at Hoag the night that Piper gave us that big scare. I felt peace and confidence that they were truly ready, since this doctor knew their case so well. The girls rode out of CHOC together in a little wagon, and we headed home for the first time as a family. We spent the rest of the month of December snuggled up at home with the girls. I can’t describe to you how amazing it felt to just sit on my couch and hold the babies. We decorated the house, watched Christmas movies, shopped online, and put out milk and cookies for Santa. It was our first Christmas we stayed home, and I’ll never forget how we made it our own.
When I look back on the tears I cried in that first ultrasound I feel a little silly, but I realize that I was crying out of fear – a fear of the unknown. I didn’t know what was ahead of me. I didn’t know that that would be the first ultrasound of so many that come with a high-risk pregnancy. I didn’t know I’d end up on bedrest for weeks, or that the babies would come so early and we’d spend months in the hospital with them. I didn’t know how much meaning a place like Hoag and CHOC would have for me and our little family – how much time we’d spend within its walls, and how many emotions I’d feel now when I remember that time. But I’m so grateful for all of that – because at the end of it we have two healthy babies with an amazing story to tell.
I firmly believe that how well Romy and Piper are doing is a direct reflection not only of their strength, but also the facilities and equipment that were made available to them, and the caliber of doctors, nurses and specialists who worked with them at such a crucial time.
Romy Jean and Piper James will turn 9 months old tomorrow. When I look at them, I STILL can’t believe we have twins, but I hear that feeling never goes away. I hope that these two little girls always know how special they are, and how many people at both Hoag and CHOC loved them and helped them get their start. I also hope that when they get older, they’ll find ways to give back. As for Blake and I, CHOC (and Hoag) will always hold a special place in our hearts, and we plan to always find ways to support them however we can.
If you would like to donate to CHOC, you can do it here. But regardless, just know how thankful we truly are for all you’ve done on our behalf already. Reflecting back on all of this, I’m seriously grateful for the prayers and love so many of you have sent on behalf of Romy and Piper. Even if I haven’t had time to respond to everyone, please know that it means the world to us!