"We Help Families Bounce And Not Break"

The Clark Family

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chelsea.d.clark

Our Story: Our daughter, Juniper, was diagnosed with complex congenital heart defects in utero at around 20 weeks. She has Heterotaxy, HLHS, ASD and VSD. She was born on August 1st, and was in the NICU for four days before transferring to the CVICU. We have been with her in the hospital each day. Due to her heart defects, she will need a series of surgeries. Her first surgery is coming up quickly. This surgery will help repair her PDA (patent ductus arteriosis). She will be recovering in the CVICU for a 3-5 weeks, potentially longer depending on how her recovery goes. As a new mom and dad, we are trying to adjust to our new normal. While we are in the hospital and loving on our newborn baby as much as possible, the world outside still spins. Since neither of us have paid leave from work, we are trying to navigate the bills and that continue to come through, though it has been a challenge. Our family appreciates any help we can get through this difficult road ahead for our baby girl.

Sept. 12, 2018, 2:40 p.m.

6 weeks old!

Greetings from the 6th floor!

On Thursday, there was quite a bit of talk about getting us out of the CVICU and up to the 6th floor in preparation for the next steps towards home. Because we are in the ‘cautiously optimistic’ camp, we smiled and nodded. We knew this was the next step but we’re also on hospital time, so...you just never know how long things will really take. Or, apparently, how short they will take. Sure enough, bright and early Friday morning, it was decided that Juniper would be moving up to the 6th floor and they brought down a huge crib for our little girl...I like to think it of it as a graduation gift. We said ‘see you later’ to our wonderful friends in the CVICU and made our next big move.

Juniper loves it up here! She has a big room, more relaxed monitoring, and gets a lot of hands-on time with mom and dad. For her transfer, her nurses were able to take her NIRS monitors off that had been on her forehead and back since shortly after she was born. They also removed her PICC line in her groin and a peripheral IV line, leaving only one remaining peripheral IV left! With the removal of these lines and monitors, June seems a lot more comfortable. She has so much more freedom to stretch and wiggle. And, though it’s not nearly as exciting for her as it is for us, she is finally able to wear clothes! We very quickly made a parenting blunder by putting her in a side snap onesie. While very, very cute...not at all practical for diaper changes. What can we say? We’re learning…

Luckily for us, we have plenty of opportunities to learn on the 6th floor. Nurses are available whenever we need them, but have 3-4 patients at a time as opposed to being 1:1 with Juniper, so her nurses up here pop in only every 4 hours for vitals and as needed for scheduled meds and feedings. Doctors come by once a day for rounds and a couple of times a day to see how she is doing. In between those times, all of her cares are up to us...finally! When we realized she was making the final move before home, Colin rushed back to try and get the house in order. They got her up here so quickly, we’re really not sure how much longer we will be here. I was so excited to be with her all night, though self-doubt crept in pretty quickly. Was I holding her correctly? Is she comfortable? What if I didn’t put her diaper on tightly enough? Is she crying because she is hungry? How in the world do I fashion a swaddle? I reached out to some friends in a panic, who assured me that this feeling is very, very normal. Thinking more practically after getting some rest, I realize that half of this is really just getting to know our daughter now that we have more access to her (Colin calls her “Juniper: Unplugged”). The other half of it is practice, practice, practice. How would we know how to do any of this having had such limited experience with newborns? Emotion really takes over logical thinking sometimes. Being first-time parents to a child born with serious medical needs, we were thrown for quite a detour in getting to be her primary caregivers. We are so grateful to (finally) be getting a better sense of what ‘normal’ parenthood of our infant is like. We know it won’t always be easy, we understand we will lose sleep, and expect there will be a lot of ‘am I doing this right?’...but having navigated many other difficult situations recently, I think we’re going to be OK, and we will continue to do the very best we can for our daughter. Always.

She continues to soar and her cardiologists are thrilled with how things have been going. We wouldn’t be on the 6th floor otherwise! The last transitional pieces are feeding and education. She is up to full feeds in her ng tube, every 3 hours. She gets all of her meds through this tube as well. Understandably, her stomach is still getting used to all of this, so her doctors will continue to make adjustments until they’ve found a balance that works for her system. Once this has been successfully sorted out, we will get information on how to administer her medications at home, things to keep track of, things to watch out for, and will be getting a pulse ox machine to be able to monitor her heart rate and oxygen saturation levels at home. We are truly in the home stretch here (ha…). Juniper’s life outside of the hospital will begin before we know it, and we couldn’t be more excited.