Haven Elaine

I wanted to have a space to share about Haven, her birth, open heart surgery, and what those days were like for us. Fair warning that this isn’t super edited or refined, just seeking to be raw and honest and utilizing this as a space to share our story.

We had Haven on December 26th and meeting her was absolutely incredible. We spent the rest of that day healing and recovering before seeing family the next day. When Haven went for her 24 newborn screening, the nurse noted that the blood oxygen level from her foot probe (bottom part of her body) were low. 

The cardiologist came in and did an echocardiogram (ultrasound of the heart) to check on her heart/blood flow and he immediately knew something wasn’t quite right, but wasn’t exactly sure. 

Haven was immediately taken up to the NICU and our world was spinning. It’s hard to remember all the details because Haven showed no physical signs of this & we didn’t know previously, so to say we were in shock over what was happening is a huge understatement. Our world quite literally turned upside down.

There are no words to describe what it felt like to go from snuggling your newborn baby in the hospital to her getting hooked up to every monitor with IVs, PIC likes, oxygen and so much more. It was devastating.

The cardiologist was kind and determined. He did several more echocardiograms, but ultimately knew we needed to be transferred to the heart experts at UVA. (2 hours away) We’re incredibly grateful for him and his decision.

I want to be honest when I say my first response when we got back to the hospital room (I was in so much physical pain after all of that, having just given birth) was questioning the Lord. I was honestly in disbelief. Hadn’t we been through enough? Having had Ellis in the hospital three weeks prior and coming off of 6 months of random difficulty after difficulty,  and just needing a breather.

I was supposed to take her home and recover on the couch while snuggling her so much and reading books to Ellis. I was supposed to learn her cues and coos and quirks and every little noise and cry right away. It’s hard to mourn that dream.

We got transferred to UVA and Haven took the children’s transportation ambulance while we followed along.

We didn’t get to see her right away, as different NICUs have their own protocol and they needed to get her set up the way they needed to.

They graciously allowed us to stay in a room right near the NICU for a few nights & we were able to visit her whenever we wanted. That was a huge blessing. Those days felt numb, but we were grateful we were able to be so close to her for those days.

We waited a couple of days as the cardiology team needed to do their own echocardiograms and discuss as a team what the issues were and how they wanted to fix them.

At that point, we had no idea surgery was absolutely imminent. 

When they finally sat us down to tell us how we were to move forward, I truly thought I was going to pass out. Not just surgery, but open heart surgery. This is where they go over the entire procedure with you, and lay out each and every possible risk factor. It was the most difficult conversation I have ever had, but at least the waiting to know what was going on was over. Now was the waiting until surgery. Those were some of the most excruciating days, but all the UVA NICU nurses treated us with such kindness and compassion. We’re so grateful for them & their immense amount of care for Haven during that time.

Friday (surgery day) finally crawled it’s way, and the Lord truly gave Clay and I a peace of mind & soul knowing it would all work out just fine. 

There is nothing like wheeling your 1 week old baby off to get open heart surgery. We got to the hospital at 4:00am and loved on her & prayed over her so much that morning.

I still had to remind myself to breathe deep during the entire surgery. Thankfully they called us each hour with an update, each one being good & concise. The final call they said “they are all done and stiching her up”

Then and only then did the floodgates open and I just cried and cried and cried and cried and thanked the Lord so much for His goodness and mercy of a successful surgery. I could never forget that feeling of relief, and an entire week of tears catching up to me.

Seeing her for the first time post surgery was both extremely difficult but also incredible. She made it through and although seeing her so swollen & with her incision was hard, just knowing she was okay and hearing the report from the surgeon left me with nothing but gratitude.

The next few days I just sat by her bedside for hours and hours and played worship music, journaled, and just talked to her. Those were ironically sweet and peaceful days. Although I desperately wanted to hold her and feed her, I was just grateful to be near. Clay and I tried to keep up with every medicine she was on and each line she had in here. There was SO MUCH, but we tried our best to learn and be informed. The first few days were a lot of just keeping her comfy while she recovered and while all the swelling went down.

Each day they slowly took out different tubes and IVs and PIC lines and her catheter and other wires and stomach tube and breathing tube and SO MANY THINGS. Each step in the right direction was exciting and beautiful. She handled it all with more grace than you could have dreamed of for such a tiny girl.

A week and a half after surgery, Haven got to leave the PICU and we spent the rest of the days on the pediatric floor. Even though we were thrilled she was healing & doing well enough NOT to be in the PICU anymore, these were certainly the hardest days for us. We had Ellis back with us, and were divide/conquering spending time with Haven/taking care of Ellis. Haven had a roommate (that was constantly changing, as her roommates were being admitted for a night and then being discharged.)

To be transparent, this was just so difficult for us mentally and physically. The nature of this part of the hospital was that the nurses were coming in LESS to check in on their patients than in the PICU (which is great!) however, it made us reluctant and scared to ever leave Haven by herself, as she would be in a room with strangers separated only by a curtain. What if she cried and annoyed them? What if the nurse didn’t hear her or know she was crying? Not that her different roommates & family/visitors were bad people, but they were constantly changing, so there was just no comfort in leaving your newborn baby with strangers. The time it took Clay and I to switch (I spent all day, and he spent the entire night) was unnerving— but it was also very hard as we didn’t get to see or speak to each other much during those days.

She luckily didn’t have to spend TOO long there (PRAISE THE LORD) and that was the time we were just trying to get her to show she could eat and gain weight all on her own! Which she did, like the baby champ that she is. Scroll to see the FAQs!

FAQs

What is the name of Haven’s heart defect?
Hypoplastic (underdeveloped) Aortic Arch

How long were you in the hospital?
We were there about three weeks!

Does Haven have to take medicine?
No, by the time we got home she was only on ONE medicine, but only had to take it for a short amount of time. She doesn’t have to take any right now! She does, however, get a special medicine at her pediatrician during cold/flu months that helps her body fight RSV if she’s ever exposed, since she is vulnerable.

What does this all mean for the rest of her life?
Really, not much! She will always have cardiology appointments for the rest of her life, and there are a couple of things they are watching out for, but it shouldn’t effect her growing up & being a normal baby, kiddo & adult!

Are you able to nurse Haven?
YES! Some of you have asked about this since I wasn’t able to nurse her for the three weeks we were in the hospital. I immediately began to pump every 2/3 hours and I continued that all the way until we got home. I’m grateful that we got in our groove once home, and she has been a little champ. She’s a peanut, but she hasn’t skipped a beat gaining weight!

Where did you stay while Haven was in the hospital?
We were BEYOND WORDS grateful to have been able to stay at the Charlottesville Ronald McDonald House. It was a blessing and was close enough to walk back and forth to the hospital in about 10 minutes.

Did Ellis understand/was he impacted?
My parents were in town to be with Ellis while we had Haven, and they were able to stay with him until we were ready for him to be with us in Charlottesville. They drove him to us the day after her surgery, and he stayed with us in the Ronald McDonald house until we came home.

We were really cautious with when we allowed him to see her, since he truly didn’t understand what was happening. Because of that , we did NOT bring him into the PICU to see her after surgery when she was swollen and had a million different wires and tubes. Instead, we “Divide and conquered” with staying with Ellis and being with Haven in the hospital. When she was able to leave the PICU for the floor, we brought him in to see her and that was a really special time for us all!

What was the hardest part?
In all transparency, the hardest part for me was just having to give birth and then immediately be thrusted into survival mode as we dealt with and processed what was happening and just all of the emotions that come along with that.

I had a csection with Haven (for medical reasons & I knew that ahead of time) and it was really brutal on my recovery to have to be immediately in “go mode” as much as I tried to relax/Clay tried to MAKE me relax to heal, it was just hard because all I wanted was to be with Haven before and after surgery.

So walking to and from the hospital every day from the RMH was not easy, and when we did get home i had to deal with a minor infection on my incision and the beginning of mastitis— so all that coupled together with just the sheer emotional impact of processing my newborn baby having to have open heart surgery right after giving birth, was just truly and vulnerably the hardest part for me.

It was also mentally hard for me to see on social media babies born after Haven get to go home right away, while we were still dealing with the emotional impact of not getting to do the same. (even though we were obviously thrilled for each parent to be brining healthy babies home!!!!)

How have things been since you’ve been home?
There are TRULY no words to describe the relief of finally being able to get home! We are still to this day just beyond words grateful.

It has certainly been a bit of a whirlwind and we’ve definitely had a few setbacks. We’ve been practicing “social distancing” since being home to keep us all safe and healthy in the midst of cold and flu season. Unfortunately Ellis must have picked up sickness from the hospital/one of Haven’s appointments, because Clay/Myself/Ellis ALL got a brutal stomach bug, and then a little over a week after that Ellis got another sickness going around— phew!

The other big thing was Haven has had some issues with her incision healing, because her body was trying to push out the stitches before they could dissolve, so unfortunately she had to have the stitches removed, which meant parts of her incision had to heal all over again. Most of it healed beautifully, but there was just one spot that caused us a lot of grief/drama/etc. but we’re almost completely healed at this point, so there is SO much relief in that!

Thank you for taking the time to read: to everyone who thought of us, prayed for us, checked in on us: we are so grateful for you and your immense love for us and Haven. To every doctor, nurse, medical professional who saved our baby’s life and fixed her precious heart: there will never be enough words in the world to describe our gratitude.

Haven & Ellis