Sweet baby Eli. Never in my life, did I think I would experience seeing one of my children, most especially a newborn, in the hospital and going through all that this little one did- it was undeniably difficult.

First, Jeff and I would like to thank everyone who has prayed for him and sent well wishes. We truly appreciate it.

Eli’s Story:

Eli was in the hospital for 20 days; 13 days in the Pediatric Cardiac Intensive Care Unit (PCICU), and 7 days in the step down unit (Pediatric Cardiac Complex Care or PC3) unit at Duke.

Shortly after birth, Eli was started on prostaglandins, a medicine to keep his PDA valve open. The PDA valve is an alternate way to get the blood to flow from his heart to his extremities- the PDA closes shortly after birth, because it isn’t needed for those born with a healthy heart.

The 1st week was the scariest. Upon birth, Jeff and I were able to spend about 30 minutes with Eli, before they took him to the PCICU. While there, we had to get 2 nurses to transfer him to us to hold, due to all the lines/monitors he was connected to. The day after his birth, his cath doctor said he does not believe that Eli will be able to have biventricular repair in the long run. This means that he will only have 1 working ventricle (the left side) and would need to have an open-heart procedure to route his heart accordingly. The right ventricle is hypoplastic- there was a lot of pressure in the right cavity and there was barely any blood flow, making the muscle tough and he doesn’t think it’s repairable. This was devastating news and different than what we thought and were told by our cardiologist back home. It means his life expectancy could go down. The doctor did say we have to wait, watch, and go from there. Nothing is set in stone right now. To me, that means there’s still hope. The plan was put in motion for him to have two cath procedures- 1st, the balloon valvuloplasty of the pulmonary valve, and 2nd, the PDA valve to receive a stent to keep it open.

Two days after birth, Eli was intubated and put on a ventilator for his 1st cath procedure. He received the balloon valvuloplasty of the pulmonary valve in the cath lab on 9/15, to see if perforating it would allow blood flow into the right ventricle. Doctors knew it wouldn’t be sufficient as the only procedure, but they wanted to gain data and see if it would relieve any pressure in the right ventricle (it did, but the pulmonary valve closed back up).

Eli developed a blood clot in the cath site (right inner thigh), so the cath-stent procedure had to be put on hold and he was put on medicine to help it along. They didn’t want to extubate and put him through all of that again for the 2nd procedure, so they kept him intubated. The days following were hard to witness. He was in pain- he’d open his mouth to cry, but he wasn’t able to do so. All the while, he’s being poked, stuck, examined, etc… He had to get a urinary catheter put in and put on diuretics, to help him lose the fluid he was retaining. From the day he was born, to that Friday, he gained 1lb 10 oz due to fluid! His eyes were practically swollen shut for a couple days.

That Friday night, he had an episode that had around 10 medical team members rush in his room…I almost had a panic attack b/c it was around midnight, and I had dosed off in my recliner sleeper. They paralyzed his body with a mild paralytic, so they could figure out what was going on. Scary stuff! They increased his pain meds as well, so he was more comfortable. He was even more closely monitored over the next couple days.

The cath-stent procedure was done on Monday, 9/20. They decided to go in under his left armpit for that procedure, since the blood clot in his thigh wasn’t 100% cleared. He was intubated and on a ventilator from 9/15-9/21 and we couldn’t hold him during that time. Lots of tears were shed!

After the 2nd cath procedure to put the stent in his PDA valve, things started to get better. His levels were becoming consistently stable, and they started weaning him off all the meds he was on- he was on Fentanyl for pain and they used Methadone to wean him off. I was finally able to hold him again (one happy mama!!). He was on Heparin to help the clot, but they switched it to Lovenox injections in his thighs. He had to get those 2x per day and would potentially be on them for a 6-week period, which meant that we’d have to give them at home.

He stepped down to the Pediatric Cardiac Complex Care unit, Saturday night, 9/25. The goals from there, would be to continue weaning pain meds, increase feeds by mouth (while continuing feeds through a feed pump/tube), and for Jeff and me to be trained in giving the Lovenox injections, inserting a feeding tube in his nose, running the feed pump, CPR, etc. I did my training that week (had to give 3 Lovenox injections and insert his feeding tube 3x). Thankfully, the Lovenox was discontinued before my 3rd dose/discharge, so Jeff didn’t have to do that, but he did have to insert the feeding tube 1x and complete the other necessary trainings.

Upon discharge, we were given a feed pump with supplies, a starter oxygen tank with supplies and once home, more oxygen tanks were delivered for as needed basis. Eli did so well feeding by mouth/gaining weight, that after our first 2 weeks home, I was able to take his feeding tube out! He was quite irritable the first two weeks home, and he didn’t know what to think of being kissed and hugged on all the time- he cried quite a bit when getting his diaper changed…probably because he associated it with getting his blood pressure checked, temp checked, injections, etc…b/c the nurses always did that as part of their assessment checks, and he always cried when they disrupted his sleep.

He now LOVES to be held and is getting stronger every day! Looking at him, you would have no clue that he has gone through so much, in such a short amount of time here with us. He had around 9 echocardiograms, 21 x-rays, 11 ultrasounds…not to mention ALL of the attempts to get lines put in (some took numerous attempts/sticks), tons of blood testing/labs, blood pressure/temp checks…there were many times I wanted to jump out of my skin due to the pain he was in. I knew everyone was helping him, but it was so difficult to hear my tiny little one scream out of fear, pain, and just being helpless to what everyone kept doing to him. Often, he would scream to the point he’d turn red and pause his breathing. Jeff and I are so thankful that is all behind us and we have a little bit of “normalcy” before his next surgery.

The hopeful news is that his peds cardiologist here, disagrees with the Duke doctor and still believes Eli is still a good candidate for biventricular repair (total repair of his right ventricle). We truly hope that is the case. He also said Eli will have open heart surgery sometime before/by six months of age. We aren’t sure of the type of surgery just yet; it all depends on what happens over the next few months, with his right ventricle. We are so grateful to all the medical team members at Duke, who took such good care of Eli. They were so patient and kind…I gave them reason to be aggravated, because I often asked questions, and rarely left the room. Jeff was my positivity booster and Eli often responded to his voice when he was able to be there with us. We are also grateful to the Ronald McDonald House for giving us a place to stay. I'm also thankful to Bonnie Currie, for being with me as long as you could for the birth and spending time with me outside of the hospital for a few hours, AND for Jeff's mom and pop, for coming to visit and bringing my other children to see me! We love ya'll! Thank you to friends who helped out with my kids back home as well, specifically Hope. So thankful for all your help! ❤

Thank you again, to every one of you who have prayed and/or sent encouraging messages. We truly appreciate the love and concern being shown to us and our family.

❤ ❤ ❤ Janel and Jeff