Overnight, Eli was taken off the CPAP and put on high flow oxygen. The goal for the day is to try and get him off all oxygen, remove his pacemaker wires, take out his catheter, (still needs the chest tube one more day) and…leave the CICU!!! Woo hoo!!! We are going to try and feed him soon too. Pre-surgery, that was our biggest challenge. Hoping post-surgery he eats like a champ. Chuck and I did go home last night to get some rest. When we arrived at the hospital this morning Eli was a bit restless. I asked to hold him. BEST. MOMENT. EVER. This mommy was in heaven. So thankful for the amazing nurses that work here. They include us in every step of their plan. They call Eli their star patient (and most say he’s the cutest!). Today should be a busy day, plus big brother is coming for a visit. Hoping Eli is more alert and stays comfortable. Continued prayers and good thoughts are appreciated!!!
It’s been a long day. I’m functioning on 45 minutes of sleep right now so if I get through this post without falling asleep and dropping my phone (from which I’m writing this post) to the floor it will be a large accomplishment.
Speaking of large accomplishments, Eli is off the ventilator. While this is wonderful news, he didn’t tolerate it as well as we had hoped. He was coming off his anesthesia (although still quite sedated) and had passed the breathing test. He was a prime candidate for extubation. They removed the breathing tube while he squirmed, kicked, and tried to cry. He worked himself into quite a tizzy. His heart rate increased drastically, his blood pressure sky rocketed, his body temperature went up and his breathing became very fast, deep, and labored. Worse than anything we’d seen prior to heart surgery. The attending physician suggested CPAP. Unlike when he was in the NICU after birth, the CPAP does not pose a great risk to the lungs at this age because his lungs are more developed. He is now resting comfortably with a little breathing assistance. The CPAP is still less invasive than the ventilator, although it looks more obtrusive.
Now I’m debating whether or not to stay at his bedside where I’ll get zero sleep or go home and get a good night’s rest. He has one on one nursing with a nurse stationed at his bedside throughout the night. His nurse has encouraged us to go home since we need to be rested when we go to the “floor” (cardiac surgery recovery wing) as he’ll have less nursing attention and we’ll have more parenting responsibility. Considering I’ve fallen asleep twice while writing this, the idea of sleep is winning the argument.
Thank you to our parents for going through the longest (albeit considerably short!) wait of our lives here at the hospital today. Many thanks to my dear friend Alicia for taking care of Cody while we were here. Also, a HUGE thank you to everybody who has been praying for Eli and our family. Please keep praying for a smooth recovery for our super hero. I am truly inspired and awestruck by this tiny human.
Here are some pictures. WARNING! Some ARE graphic.
On Thursday, we had the pre-op appointment for Eli’s surgery. We met with the surgeon who explained what would happen during surgery as well as the risks. I chose to try and not listen much to the risks. He kept giving us the odds (1 in 600,000, etc.) of something happening. I finally stopped him and told him we don’t really pay much attention to odds considering we were the 1 in the 1 in 1000 parents who are blessed with a baby with Down syndrome. He took interest in our story and asked about how we found out about Eli, etc. It was nice that he actually seemed to care. He is a highly skilled surgeon and seems quite compassionate.
He told us Eli’s surgery is an “easy” one. That was comforting, considering. We will be away from him for 6-7 hours start to finish. I thought about writing about the details of his surgery but it may stress some of you out. The synopsis is that it’s open heart surgery to repair a large hole in his heart. His heart will be stopped and a machine will function as his heart and lungs. This is what terrifies me the most. That’s where most of the risk lies. But I have faith that the Good Lord will keep watch over our sweet baby. He will guide the surgeons and nurses in their care for him.
I am anxious about seeing him after surgery. I’ve been warned that he could be puffy and will be hooked up to multiple tubes, IV’s, drains, and machines. I obviously will not be able to hold him. Luckily, as long as he’s intubated, he’ll be sedated. Once they are confident he can breathe on his own they will remove the breathing tube. After that is out they will decrease his sedation. I am so hopeful that he will not feel much pain. Seattle Children’s Hospital has a great reputation for pain management so I trust they will take care of his needs. He will most likely be in the CICU (Cardiac Intensive Care Unit) for 2-4 days then moved to the surgery recovery floor. His stay on that floor will last until he is ready to go home. Our total hospital time could be anywhere from 4 days to 3 weeks. We pray that Eli is a good healer and strong enough to go home sooner than later.
I have been sick to my stomach since we left that appointment. Although I was assured that he will be in highly capable hands, I am made anxious by thoughts of what poor Eli will have to endure. Thankfully, most children were born resilient and our son was born a fighter. This will be his biggest battle but he’ll have an even stronger heart to do it with. I have no doubt he will be victorious. He will one day wear his scar as a badge of honor. As Eli’s parents, we could not be any more confident of his strength.
We ask that you continue to keep our precious son in your prayers. We ask for prayers for us as his parents. We pray for strength. We need the support and love of friends and family more now than ever. It is not easy for us to ask for help. But we also know that our superpowers may fade. Super Mom and Super Dad may need Super Friends to swoop in and rescue us. We have been blessed to not go through this alone. Thank you for your continued prayers and good thoughts for our family.
I will update this site as time permits. I’m guessing there will be a lot of downtime. I may need an emotional outlet (which is what this blog has become to me). Please forgive me in advance for any rambling I may do.
Love and blessings always. xoxo