Sometimes, I think Elisa and I forget that there are other people in the NICU, battling with the same demons, frustrations, waves, and unknowns. Don't get me wrong, we see the other parents. But the connections between us aren't natural. It's like we're in our own little worlds as we go from visit to visit. Earlier in the week, we noticed a new couple that seemed friendly enough, with a little baby in NICU Level 3 (oh, been there, done that girlfriend!). I think I might have exchanged courtesy smiles and head bobs with the Dad...we don't get much deeper than that when we're male. Today, we arrived for our 11:00am feeding and were going to learn how to operate our home monitors. The door to Level 2 and Level 3 are close together, and the NICU decided to put automatic openers on the Level 3 doors. Long story short, I got to know the new couple because I was patiently waiting outside Level 2's door for the monitor tech to enter in front of me. Suddenly, the right side of my body was nearly thrown into Level 2's door. The new couple had picked the most inopportune time to push that auto open button as they left Level 3. I *think* I said it was no big deal as I massaged my arm. And we both went on our way.
It wasn't until we arrived in the parking garage for our 2:00pm feeding that we met again...in the elevator. Probably driving Elisa crazy in the process, I recognized the couple and as we stepped on board and said "Oh great, it's the people that tried to kill me with the NICU door!" I rubbed my arm again for effect. They laughed. I laughed. Elisa stared at me. It was grand. As we rode the elevator up and walked together to the NICU, though, we actually talked. They asked about our boy. It was horrific to tell them that we had been there for 16 days and counting. It was wonderful to tell them that he was going home tomorrow. They had a little girl (apparently we have 3 boys, they have three girls...I stopped short of asking if the youngest was in curls) that was born on Monday and came to the NICU on Wednesday. They were hoping for her improvement in Level 3. It was a brief encounter, but I couldn't help but feel an understanding and bond between us. I remember walking past what looked like a normal Dad to be as he headed into Labor and Delivery. No understanding. No bond. But when you look into another parent's eyes and you don't need to explain the fear, frustration, exhaustion, or worry, that's a wonderful thing in a horrible situation. One that I'll never forget. I truly wish them the best and hope to see them again before we leave.
And today has been all about trying to leave. It's amazing how many things need to happen to get a kid discharged from the NICU. It started early. And it started with our daily scare. Because what would a day in NICU be without a bone chilling worry session? This one began at our 11:00am feeding. We arrived to feed Sam and the nurse dropped a "by the way, Dr. Lupine got Sam an x-ray this morning. Not sure what we was looking for!" and walked off. In any calm person's head, you would wonder if this wasn't a checkbox required for discharge. For us, it was panic inducing. Had something happened? Was he exhibiting signs of distress? By the time Sam was done eating, we had concocted our new reality that Sam was in distress, they had discovered something new, and we would not be taking him home. We weren't scared of it. We were sure of it. Trying to be the proactive lion that I became yesterday, I marched out and talked to the good doctor. He smiled and told me that they just hadn't done a baseline comparison of his chest and lungs for over a week and he wanted to have one before discharge. He was nice enough to show me the x-ray, pointing out that Sam's lungs looked good and his heart still showed to be "slightly" enlarged. No change. Nothing to worry about. He added a "everything looks good to send him home tomorrow!" When I walked back into Level 2 NICU (don't worry, I ninja'd around to the door in case another parent was out to sabotage me!), I just shook my head at Elisa to convey that everything was fine. I could feel her worry exhale from across the room. Sam was still going home.
Between our 8:00am and 11:00am feedings, the home medical equipment company had also called to see if we could learn the equipment at 11:30 instead of 5:00. It was fine. So we headed into our 11:00am feeding, I nearly lost an arm due to the automatic doors, and Sam ate. And then we waited. And waited. And waited. At almost 12:00pm, I called Apria and just as I started to complain, the behemoth of a tech arrived. Honestly, he's the type of person that you would expect has a blue ox named "Babe". He held the pulse oximeter in his hand and I worried for the equipment's safety. It was probably like a little thimble in his man hands...he could crush it at any moment and think that he'd just cracked a knuckle. After getting over my fear that the equipment might have been broken, he went about training us. In actuality, the equipment is pretty straightforward. He informed us that Sam's oxygenation would start to alarm if it reached 87% or below. It also tracks Sam's heart monitor, alerting us if his rate gets above 210 beats per minute, or below 80. Otherwise, he said, you could turn off the incessant beeping. And we were glad to hear it, because the heart monitor beeping got old after 20 seconds. I sat back with joy and malice as I watched him try to show us how to turn the volume down and fail...repeatedly...until he realized that he had to unlock the unit. Then, things progressed appropriately. We became experts (well, we watched him do everything) at the home medical equipment and sent Paul Bunyan on his merry way.
We had just enough time to go and have lunch with the boys before we had to be back before 2:00pm. We had a special present for Lukas and Miles. Now that Samuel was free of most of his contraptions, the nurse said it would be okay to wheel the boy into the next room and open the curtains. The boys would get to see their brother. Lukas could now be sure that Sam existed. When we opened the blinds, Lukas tried his best to look over the ledge. This isn't like the windows at the well baby nursery, where they clearly know that little kids will be looking at a baby. No, Lukas was going to have to be boosted by Grandma. When he was, you could see his face make the "oh!" expression. He then put his hand across his mouth, as if to say that Sam was more beautiful than he thought possible. Next, it was Miles' turn. He was picked up, and, for a moment, just stared at Elisa. I think he might have been scared to look. Finally, his eyes made their way down to Sam and you could almost hear they "awwwww!" coming from his little voice. Lukas and Miles took turns being held by Grandma, yet their eyes' appetites to see Sam couldn't be satiated. They wanted more. They didn't want to leave. When Elisa took Sam back to his room, Lukas made a motion for me to come give him a hug. I went out and both boys ran to me. Lukas exclaimed that Sam was "beautiful!" They both couldn't wait for Saturday to come. It melted my heart.
We had only two more activities scheduled for the day, and the first was one that felt so sad (that it had taken so long) and so wonderful (that it was happening). Elisa, the boys, my Mom, and I went to Babinski's to pick out Sam's take home outfit. Elisa is such a wonderful, caring mother. And part of her being so good is the fact that she is a baby master. She loves the infant stage. Loves it. The smell, the cooing, the "I need help doing everything, mommy" reality. Imagine the pain and anguish to watch (and for her to experience) her lose the first two and a half weeks of her favorite baby time. Crushing. About a week into this ordeal, I remember my parents bringing us a couple bags worth of baby clothes (now that they knew it was a boy). It was on a day that we received bad news. We couldn't even go through the bags. At that point, I wasn't sure Sam would come home. How could I look at clothes that he might never use? Now that we knew Sam would be heading home, though, Elisa allowed herself this fun. She picked out two adorable outfits. One with trains (Miles will be thrilled) and one with fish. Both were great choices and I didn't mind paying the Babinski's price (although, it does feel like Babinski is the Pottery Barn of baby. Well, except for Pottery Barn Kids of course).
And with that, we sent the kids to Grandma's for one final overnight. My parents have been so wonderful through this. My Mom, especially, has been unreal. She has come every day that we have been home, taking the kids to school, helping with breakfast, taking the kids to her house when we needed a break, and keeping the kids otherwise sane. She didn't complain once. Didn't ask to change the schedule. Didn't give me grief when I needed her there at 7:30 in the morning. But today, when we were sitting at home in between feedings, she said what we all felt. This had even been exhausting for her. She wasn't complaining, only stating a clear truth. And as she said it, I knew she wouldn't have done a single thing differently. I can only imagine how hard it has been for others as well. Thank you, Mom. And thanks, Dad. The kids were in good hands. And we needed them to be for one final test before tomorrow's festivities could commence. We needed to do a dry run at the hospital, with Sam hooked up to the home equipment but with the NICU nurses close by.
We arrived, and you could tell that Dr. Lupine was starting to feel overwhelmed as well. He pushed us to sign a document that allowed him to release documents to Dr. Day. While we were signing, I got a call from Dr. Day's scheduler saying that he needed the reports. Clearly, everyone is focused on getting Sam home, but there is a lot of work and preparation when you're sending a child home on oxygen and with still to be resolved (fully) pulmonary hypertension. We, on the other hand, were focused. We got Sam ready and wheeled him across the hall to the Guest room. Our plan was to stay from about 5:00pm to the 11:00pm feeding. We would then do something that we had not done in nearly 17 days of NICU fun. We decided to let the nurse feed Sam bottled breastmilk at the 2:00am and 5:00am feedings. After so many days, the weight of Sam coming home had started to hit us. We were realizing just how tired we were and thought it be best to get a good night's sleep.
We attached Sam's machine up and the nurse left. And wouldn't you know that the home medical tech (Mr. Bunyan, I presume) had set the limits incorrectly. Sam's oxygenation was going off at 93. The heart monitor beeping couldn't be turned off. Elisa and I were a mess, trying to figure out how to fix it as well as making sure that Sam was okay. After all, we were supposed to be targeting 88% saturation or higher, not 94%! At this point, it would be easy to say we felt like we were back with the other 3 neonatologists, but that would be mean. So I won't stoop that low. Oh wait...
Once we got the limits fixed, we started watching the monitor. And it kept going off, even at 87%. The nurse stopped by to see how we were doing and we expressed our worry. And she said two things that calmed us down. 1) The monitors are going to beep, especially when Sam is moving and wiggling and crying. If something is truly wrong with him, his lips will start to turn blue. He'll go limp. So use the monitors and alarms to assess Sam with our eyes. Then, know if he's okay or if the monitor is being an imperfect tool. 2) If they didn't feel 100% confident about Sam's stability, we wouldn't be sitting with him in the guest room (without a single NICU monitor attached). Both comments helped. She went on her way...and the monitor started going off again. So I tried to fix the sensor setting. And I made it worse. Enter the baby master. In rare form, she got the monitor re-situated and Sam's oxygen saturations immediately improved. From that point (until this very moment as I write), Elisa has had Sam on her chest. I think they're making up for lost time. It's the happiest I've seen her in months. It's the most relieved I've been in weeks. It's the beginning of the end of Chapter 1.
That doesn't mean that tomorrow will just be celebration. Don't get me wrong, it will be a lot of celebration. But there's another truth that they don't tell you when you arrive at NICU. When the ordeal starts, you have a sick kid. When you take them home, they were still a sick kid for a period of time, and all of them are still healing. They're just healing at a point that they can continue their journey at home. We're taking home a little man of perfection, whose health is imperfect. And it's frightening. Will we be able to step away from the monitor or will we watch every heartbeat with worry? What is going to happen at the cardiologist appointment on Monday? You don't sit and think you'll be told he's fine. No, you start envisioning him immediately admitting Sam into Primary Children's, and this whole nightmare starting over. As good as Sam has done at getting over this pulmonary hypertension, he's not fully better yet. He still breathes fast. He still retracts when he breathes. His heart is still slightly enlarged. He's still on oxygen. This is simply a big milestone in his greatest journey. And even when I write the blog that states that Sam is the model of health, that won't be the end either. Because now, we're NICU parents. We have a NICU kid. And I don't think we'll look at any illness, bump, bruise, or breath the same way. Ever again.
Nor do I want to. Because I'm a NICU parent of a NICU kid, and the world will never look quite the same ever again. For bad, yes. But for good as well. And eventually, for great.
Brad
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