The quick version is this, she went from this…
in 5 days!
The long version is, of course, much longer. It was the hardest experience of our lives thus far and we really, really hope it remains the hardest experience of our lives! Surgery wasn’t until Friday morning, but things got tough around Wednesday. Dropping off the kids, getting packed up and ready to go, it all made it pretty impossible to keep ignoring what we were moving towards. I spent most of the night awake, looking at my sweet girl. It felt like Christmas Eve, but the sort of anticipation was all wrong. Very early Thursday morning we went to the hospital for pre-op, which was a marathon day, and we found out two things. First, they had changed policy the week before and we did not necessarily have to be admitted to the hospital that night. Second, the hospital was at red (meaning totally full) and they may not be able to do her surgery on Friday if an ICU bed didn’t open up. As you can imagine, that it exactly what you want to hear after packing everyone up for a week and gearing yourselves up for something major like this! After we finished with everything (x-ray, labs, nurse meeting, child life meeting, social work meeting, surgery meeting, anesthesia meeting), we were semi-free, but had to stick close to the hospital while they decided what to do with us. We went to eat and then came back, puttered around some (pumped, ect) and then went up to clinic to check for an update. They told us they didn’t have a room and we did not need to be admitted so we started looking for a hotel, so we wouldn’t have to fight through AM traffic again to be at the hospital at 6:45. We found a little extended stay place nearby that had fridges in the rooms, which was important to me as I’d been lugging a cooler bag of my milk around all day! When we got there, the fridge didn’t feel cold but I turned the dial down more and thought it would cool off. Spoiler alert, after lots of waiting it did NOT. This was the only time I started to unravel a little in this whole process, because exclusively pumping for Jo is pretty much the HARDEST job I’ve ever had and I fight for every ounce of it (and we still have to do a mix of elemental formula and breastmilk) so the thought of my milk spoiling in a cooler bag at the 24 hour mark was just the last mental straw. If we had been admitted, my milk would have been safely stored in the milk bank, as planned! But no, here we were with a broken fridge at 9pm and 2 days worth of breast milk hanging in the balance. AGH! But Josh called the front desk and they said we could store it in their fridge. WHEW!/MY HERO! With that handled, we got ready for bed, set an alarm for 2:30 since it was the last time Jo could have breastmilk/anything prior to surgery, and managed to get a little sleep. It wasn’t restful, but it was more than the night before thanks to our exhausting day.
We got up early and headed to the hospital, hoping surgery was on! In pre-op, they told us that they STILL weren’t sure if it was happening, but they’d officially call it by 8:30. Eeek! Josie was a great sport even though she probably would have liked some food by now, and she played a little and then fell asleep.
They came and told us everything was a go and it was the weirdest, most intense mixture of relief and DREAD that I’ve ever experienced. Jo was fine, though, busy making friends.
After lots of talking and paper signing, we walked Jo down the hall and handed her off and they took her (and her binky and her Duck-Duck) from there…thankfully without any pokes or anything yucky while she was awake. Handing her off was hard for us, but she didn’t mind!
We spent the next several hours in the waiting area, which was really nice. They had a kitchen and snacks and tables and couches and our best friends came up to keep us busy while we waited. It was exactly what we needed and made the time bearable. We will forever (and ever and ever) be grateful that you guys were there with us!
We were given a restaurant-style pager that went off every hour and a half or so. When it buzzed, we went to a consultation room and our surgical PA came and gave us an update on what had happened so far and what would be happening before we saw her again. It was very helpful and reassuring. Then we’d go back to playing dominos and pretending like people were not in our baby’s open chest! Three cheers for denial!
These were the updates I posted to Facebook during those hours:
8:33am She’s in the OR now.
10:25am She is doing great so far. Perfect vitals. They placed her central and arterial lines while she was under and they are probably opening her up now. They said she wins the cutest baby award.
11:18am They are in her chest now and in the process of putting her on heart-lung bypass. All is still going well. They got us a picture of her heart, like her big sister requested.
12:47pm VSD is repaired, heart is closed and restarted! Now they are putting in chest tubes, pacing wires, ect. She’s still doing well.
2:11pm Surgery is done. She did perfectly! We will see her in the ICU in 45 minutes to an hour.
And at 3:30pm, we got to see her! It was 6 hours that felt like at least 24. By midnight, I swear it had been 3 full days since I woke up.
Once everyone left, we headed to the ICU. Honestly, our ICU time is a bit of a blur. We were exhausted and didn’t want to leave our girl and it all kind of runs together. We were there for a little over 24 hours and in that time, Josh and I both got about 1.5 hours of sleep each which we got by trading off going to our Ronald McDonald house room some time between 2 1 and 6am, I think. We were running on coffee and prayers, mostly.
Facebook tells me that she was extubated a little before 10pm that first night and then was very unhappy for a while because we couldn’t let her eat. That was one of the hardest parts of the ICU, not being able to feed her. First she couldn’t eat because it was too close to exubation and then was only allowed 2 ounces every 3 hours because of fluid restrictions. It made for an unhappy Jo. She was also obviously uncomfortable after surgery and we couldn’t comfort her like she was used to and then we had to withhold food on top of it. But the following evening, I finally got to hold her!
We were moved to a different ICU room because Josie was ready to be on the floor, but they didn’t have room. And shortly after that, a room opened up so we went down to the regular floor. Yay! Do you know what regular rooms have?? A bed for parents! No more choosing sleep or being with our girl! We left her in a crib that first night, but it was a mistake. We took turns hanging off the edge of it all night to give our co-sleeper some comfort, so the next night when we got moved again, I asked for a big bed for her and signed the co-sleeping waiver and we were FINALLY in a position to get some real sleep! On the floor, they also lifted her fluid restrictions so she was finally satisfied and not starving all the time! Yay! Things moved pretty well from that point on.
Lets jump back to the beginning of recovery for a minute. She was hooked up to A LOT of stuff at first; she was intubated and on a ventilator, had an NG tube to keep her tummy empty, two peripheral IVs, 1 arterial line, 1 central line, chest tube, pacing wires, plus regular monitoring stuff. She was on several IV medications at first.
But Josie had a pretty steady road of recovery and dropped things quickly. First, she was extubated. The only problem there was she experienced some stridor and required a racemic epi nebulizer treatment and a round of steroids for the next 24 hours. Later, she had a beside laryngoscope and they discovered she has a paralyzed vocal cord. It may have been pre-existing as she has experience stridor before or it could have been caused by the surgery or intubation. We have to follow up with ENT about it and are having to watch her for signs of airway issues and aspiration. Intubation was also pretty rough on her poor little nose.
After extubation, she was on O2 for a while and then dropped that. You can see her chest tube here and the pacing wires (in case she had rhythm issues) are under the gauze.
Then they pulled her arterial line…
Before we moved to the regular floor, they pulled her central line (in her neck, it still has a yucky bruise)…
Then the chest tube and pacing wires came out…
And the last things to go were her peripheral IVs right before we were discharged! We really could not have hoped for an easier/better recovery for her in the hospital. It was a busy time…labs, chest x-rays, laryngoscope, echo, pulling lines and such. Seems like things were happening every day and we never had a day where we were just sitting and waiting, our girl just kept on knocking down those milestones and then we were free!
Some of my favorite moments were these:
First finger squeezes in the ICU that first night while she was still intubated and sedated…
First open eyes in the ICU, probably 24 hours or so after she was out of surgery…
And first SMILES, at 3 days post-op!
Each of them meant that our sweet girl was coming back to us more and more! ♥
Since we’ve been home, she has continued to do well, but is somewhat frustrated with her limitations. At 6 months, the wider world has just really opened up to her and now it all seems slightly out of reach. It has been a very demanding and hands-on phase of parenting for Josh and I as we try to keep her happy and entertained within her limits. The first couple of days at home, she did NOT nap, which compounded things a bit. Thankfully, naps are back! While she is allowed to do whatever she can comfortably do herself, she is tentative with things like rolling over, but laying on her back is NOT very fun since she knows there is more to life! A lot of fun things we do are off-limits because of the way we have to hold her. No fun lifts over the head or knee bouncing or standing in our laps. I can’t manage to put her in or take her out of her stander or Bumbo with the approved holding position so that has to wait for Josh. Life is just different than she is used to and she doesn’t really understand why, I’m sure. But we are already 1.5 weeks post-op so only 4.5 more to go before she can get back to normal! Yesterday her chest tube stitch was removed so now baths are back on the list! Yay! We are still also on germ-restriction until the 6 weeks is up and need to be extra careful now that she also has airway issues, so it means a lot of time stuck in the house which is only so interesting (for all of us, LOL!). She seems to be adjusting a bit more the past couple of days, though. Regardless of the little challenges, we are so thankful she is healing well and hope it continues! The challenging parts will be short-lived and we are so thankful that our girl came through this huge surgery so successfully. We’re not quite out of the woods yet, but we can see the light in the distance now! We are so thankful for all the support and prayers and all the little and big things people have done for us along the way. None of it has gone unnoticed even if we haven’t gotten around to making official thank yous just yet!
Here she is yesterday, happy and up half a pound since Friday! Having a properly functioning heart really makes growing easier! So, so, sooooo thankful our precious girl seems to be thriving now!!!
November 4, 2015 at 12:26 pm
So glad things went so well! Jo looks amazing! Once she’s completely healed/recovered from this surgery, is her heart problems forever in the past or will she have some limitations all her life? I guess what I’m saying is will she be able to play sports, etc.?
For us non Facebook forever followers; pls keep the good news flowing when you can!
How are the sibs doing w/ all of this? I bet their glad to have their baby back too!
November 4, 2015 at 1:03 pm
It *should* be a once and done procedure. But sometimes things don’t end up that clear cut. She’ll be followed by cardiology forever, there is a chance that they may have to clean up the patch at some point if tissue accumulates and causes blockage and her last echo showed there might be some decreased function, but it may just look that way because of the patch…so much is unknown. But the odds are in her favor for it being fixed for the long haul!
November 4, 2015 at 1:15 pm
Thank you so much for the update. I’ve had you on my mind.
Josie looks amazing after undergoing such an ordeal! I love hearing that she bounced back so well! I’m still praying for her complete recovery and for you and yours!
November 4, 2015 at 5:21 pm
Look how beautiful and healthy she looks! It’s amazing what a difference the surgery made. So glad things went well. Will continue to keep you all in my prayers.
November 4, 2015 at 8:30 pm
I have something in my eye and my cheeks are wet. Hugs all around. You are all an amazing family. Keep going Jo! You’ve got this.
February 28, 2017 at 5:51 pm
Thank you for writing this. It’s helpful for those who are just beginning this journey.