Post-Norwood updates

Daniel had his Norwood procedure on Friday, August 10th. He is doing amazingly well, and he has had no major problems or hiccups in his recovery so far. So much of my mental energy went to anticipating his birth and his Norwood. I envisioned terrifying scenarios for both, and none of those scenarios has happened. I wasted so much mental and emotional energy fearing things that would never come to pass.

Dr. Salazar closed his chest on Sunday, August 12th. He responded well to that, and he is continuing to heal nicely. They stopped giving him the paralytic that kept him immobile, so he is moving around more, and they are continuing to cut down on his sedation. This means that more and more Daniel will be waking up. This is extremely heartbreaking to watch. He is intubated and waking up, which means he is really uncomfortable. He will be crying more as they suck out secretions (mucus, etc.) from his breathing tube, and I won’t be able to hear his cries. It is absolutely agonizing watching my sweet baby go through all of this, just as it was after his pulmonary bands surgery.

Unlike when he had his PA bands surgery, now I am so much wiser about how all of this fits into the healing process. I am in a unique position watching him heal from his Norwood. Most parents of babies with HLHS give birth and then, within 7 days, their babies get the Norwood. I imagine that must be an extremely difficult experience because mothers are healing from birth, having to see their babies swollen with and open chest and hundreds of tubes coming out of them, and having to adjust from the NICU to the PICU.

My situation is different. Daniel will be a month old tomorrow. We have been in the PICU for 3 weeks, and I was able to watch him heal from his pulmonary bands surgery 3 weeks ago. I know what it is like to wean off the ventilator already, I know that all of these tubes will go away within several days, and I know about how the PICU works. I trust all of these nurses and doctors because I have been through at least 20 days of rounds, watching them work and make decisions about my baby. If there is a silver lining to having a premature baby with a heart defect, it is that so many unknowns that would be causing me extreme emotional distress are now known.

That doesn’t mean it is easy. If most definitely is NOT. This is horrible. Can you imagine seeing your precious baby with an open chest? I looked at the thin layer of gortex covering the opening, and I saw the material moving. In horror, I realized I could LITERALLY SEE HIS HEART BEATING. Not to mention his body is extremely swollen. Being on the cardio-pulmonary bypass machine apparently stuns the kidneys. Over the next few days, his kidneys should “wake up” more, and he should be peeing out much of this fluid. But still…it is heartbreaking seeing Daniel so swollen.

Last night Daniel de-satted, which means his oxygen saturation went down really low. Apparently he had thick secretions clogging his breathing tube, which meant he couldn’t breathe. The RT can’t suck out the secretions when his chest was open because it would have changed the pressure in the chest and caused a lot of pain, so the secretions built up over two days, which is why it clogged his tube. Now that his chest is closed, hopefully that won’t happen. I am SO GLAD I wasn’t there for that episode. I would have probably passed out from stress. As I was typing this, the RT came in and bagged and suctioned him, and his arterial blood pressure went sky high, and I looked over and his face was red and blue. It was TERRIFYING. Apparently, because Daniel is awake more, he got really mad when the RT did that, which caused his blood pressure to spike.

The plan for today is to begin slowly weaning Daniel off the ventilator. When I came in this morning, the respiratory therapist had Daniel’s breaths per minute set at 28. That means that the machine would force him to breath that many times. He was pretty much just “riding the vent,” meaning he was just letting the machine breathe for him. Then they turned it down to 25 beats per minute. Now Daniel is breathing over and above the machine more. The hope is that he will need fewer breaths per minute to keep his oxygen saturation numbers up, and maybe we will be able to extubate (take the ventilator out) tomorrow or Wednesday.

I know from after the pulmonary bands surgery that watching this process is really difficult. Sometimes Daniel will stop breathing for several seconds when they turn the machine down, and I freak out. Many babies stop breathing like this all the time, but they aren’t hooked up to any machines that tell you they do, so we as parents don’t know about it and don’t worry. But every little thing alerts for Daniel, and it is really stressful to see him fight to breathe. As a parent, I can’t stand this. But it is completely normal for the respiratory therapist and for the nurses to see this all happen. I know I have to somehow disengage or go for a walk or something to keep my sanity. One of the most important lessons I have learned over the last month is this:

What seems like a big deal to me is not actually a big deal.

I have learned the doctors and nurses know what they are doing, they see this all the time, and they have the experience they need to deal with literally any scenario that arises. Not only do I know this to be true in my mind, I have seen this in action over the last month. I, on the other hand, am an English teacher; I have no idea what any of this means. I have never seen something like this, and I have absolutely no experience with watching an infant recover from open heart surgery. As I watch Daniel cry silently, as I watch his heart rate and oxygen saturation and respiratory rate and cranial and renal profusion numbers, I am trying to remember that all of this is normal for Daniel and will soon seem like a distant memory.

Here is how I am keeping my sanity:

1. I am using this time to get to know Jesus. I am devouring my Chronological Life Application Study Bible like a starving person. I am reading the Gospels, paying attention to Jesus’ words and his actions. I am falling in love with my savior, and I am in awe of how reading the Word like this has transformed my life.

2. I am talking to the nurses and doctors. When they tell me something about Daniel, I usually ask, “On a scale of 1 to 10, ten being crisis, how big of a deal is this?”

3. I am making sure I eat and drink frequently. This is really hard because I can’t eat and drink in his PICU room. The PICU room has to remain sterile in case they need it as an emergency operating room. So, I usually go pump, then I go eat and drink. I thought I could ignore my bodily needs in order to stay by Daniel, but then my heart rate started crashing, and my blood pressure was rising. I had a wake up call the other day when I felt like I was going to pass out while holding Daniel. I got dizzy, my vision started blurring, and my head felt like it was going to cave in. I called the nurse, who put Daniel back in bed. I looked and my resting heart rate was 42 beats per minute. Apparently, all of it was stress related, and it was exacerbated by the fact that I hadn’t eaten that morning. Even though I was okay mentally, my body was still reacting to the extreme stress, and now I know that I can’t ignore myself.

4. I sit in the Ronald McDonald House lounge on the 9th floor and look out the window. I love seeing this expansive medical center. I crave the sunlight, and I love seeing the sky. It is really important to remember that there is life outside these walls.

Thank you all so much for all the prayers and support. I am so incredibly thankful for all of you. When the chaplains come in to visit, they ask, “Do you have any kind of spiritual support system?” I am then able to explain how blessed we are to have so many people praying for us. Please continue to remember Daniel, and us, in your prayers.

(I am trying to get outside and remember the beauty around me no matter how scary it can get)