When I first started writing blog posts on Sam's condition, I remember trying to forcefully make the point that Sam's story and life would have many chapters. I wrote that on a day where I wasn't sure if he would be coming home, or really what was fully wrong with him. Call me naive, but I think back then, I looked at fear as the same thing, regardless of driving forces. I was scared for Sam, and I wrote to try to convince myself that he would come home. Now that he's home, I'm starting to realize that fear means something altogether different now. Both kinds of fear worry about Sam. But the one we're experiencing now...it's unique.
Fear from the NICU is a mix of adrenalin (you're always walking into a potential situation where things are improving or declining, you're making progress or remain stagnant), and what I'd describe as "acute". You're worried about the present. Will Sam eat? Will Sam continue to breathe on his own? What are his oxygen saturations? What did the 1st/2nd/3rd/4th echocardiogram tell us? When will he start Nitrous Oxide? When will he wean off of it? What is his oxygen content? You're worried about the moment, and the various milestones that will give him a clean enough bill of health to go home. Because that's your end goal, and where your fear is based...on the simple question of "if/when will my baby come home? It was a strange feeling to leave the acute fear. And you could almost feel yourself coming off of the adrenalin high as we settled at home, my parents left, and it was just the Fab Five for the rest of the evening. I was glad to leave the fear behind. I just didn't expect a new one to begin so quickly. But first, a few updates on home life with little Sam.
When we brought Miles home, I remember wondering how Lukas would do. We went out of our way to make sure he felt loved, but you could tell that he was going to slowly adjust. That, and he approached Miles with an inquisitive air. Who was he? Would things change? Was he going to be the center of attention? With the arrival of Sam, I wondered if we'd have two boys battling those emotions, but have been pleasantly surprised and amused at what Sam's two brothers have been like. I think the appropriate term would be "suffocating". They absolutely, positively, adore Sam. Yes, they were cute when Sam arrived home and they eagerly greeted him. But in the last 24 hours, they have wanted only to be with Sam, to hold him, talk to him, dance for him, and entertain themselves in the process. We put Sam in his little swing and found Lukas on one side and Sam on the other. Lukas was telling him about things like Lagoon, Disneyland, and how much he loved him. Miles was too busy showing Sam his new trains (a present from Sam) and thanking him profusely for the thoughtful gift. Not much changed after dinner. The boys wanted to have snuggle time with Sam. They paced outside his room as Elisa fed him. They wanted to watch him get cozy in the basinette. And when I took both of them to bed, there were tears. They didn't want to leave the newest member of our household.
It's continued into today. Lukas and Miles have already held Sam 4 times today. During Sam's first at home bath, Lukas was in charge of taking pictures and Miles sat on the top of the toilet tank to get a bird's eye view. Before naps, Lukas wanted to make sure he got to kiss Sam before he was put in bed. Miles was sad that he wasn't going to be snuggling on the bed with them. I even had to caution Lukas at one point to not be so forceful in his delivery of "Sam, you're my favorite brother!" as Miles stared at him. Indeed, the boys are in love. I see/feel no sense of jealousy. The closest we got was Lukas worrying that Sam was getting all of the attention - until we reminded him that all of the attention was being generated by Miles and Lukas. He seemed to understand.
Sam was also a champ at his first night home. It's hard to remember that Sam is heading towards being three weeks old, so it is a slightly different experience than three days after birth, but still, Sam did better than I expected. We found that he was actually hungrier a bit earlier than his 3-hour schedule dictated by the NICU. His last feeding of the day happened at 9:30pm, and we were delighted to see that he wasn't awake to eat again until 1:30am. 4 hours? Yes, thanks. I'll take that. Sam followed that up with a 2:00am to 6:00am sleep session as well. If this is going to be Sam, I'm already appreciative. 1 real middle of the night feeding? I could get used to this! You can tell that Elisa and I are still trying to get caught up, however. We didn't actually get out of bed until well after 7:30am. Hey, Sam went back to sleep so why couldn't we? Lukas and Miles were entertaining themselves downstairs...that is, until they got bored. We were awakened by Miles and Lukas bounding into the bedroom to "check on Sam".
Interestingly, one thing that NICU fear does is it paralyzes you to needed errands and "to dos". Now that Sam was home, we quickly realized that we needed a deep freezer for the impending rush of breast milk over the next year, as well as a stroller that would work for our carseat. Elisa and I are usually overprepared, so finding ourselves in a position to not have a couple important items was really unlike us. So I left Elisa to take care of little Sam while I headed off on errands. I picked up a Halo blanket (we learned to love the snuggle wraps that look like straight jackets at the NICU), stroller, fabric softener, and a deep freezer. Yes sir, we're getting set and ready to go!
For me, however, it was while on errands that a new fear...a different kind of fear...started eating away at me. Yesterday was bliss. We were so tired but so happy, and before we knew it, the whole family was asleep and resting. While on errands, I just started feeling off. I was clearly off enough that I had three different people ask me if I was okay. And while I didn't feel like something was wrong, clearly something was and continues to eat at me. If the NICU fear could be called "acute", then this new fear is going to be more of a chronic variety. Because the rules have changed, along with the pace of our lives. Instead of the NICU questions I mentioned above, I had a new string of questions and concerns. Whereas the NICU is "if/when will my baby come home?", now I'm worried about "if/when will my baby be healed?" In many ways, it's a duller, less pronounced fear. But we head into tomorrow's appointment, unsure of many things.
Is the pulmonary hypertension still resolving? Is his oxygen need growing, shrinking, or remaining stagnant? Is the pulmonary hypertension really idiopathic? How long will he be on oxygen? What other drugs will we need? Is there something else going on with his heart? His lungs? What is his long term prognosis? Will he see any developmental or physical delays or effects? At this point (and I hope I'm not wrong), I'm not fearful that Sam is going to stop breathing or relapse back into the hospital. I'm just worried that this will take 6 months, 1 year, or will always be something that Samuel is battling. I have no basis for this thought...everything we have researched says that once it is resolved, it doesn't come back and doesn't have longterm effects. But it's a new, dull fear that brings the entire day a bit down. And it's a harder fear to face. Because this time, you don't have adrenalin. Or doctors telling you, on the hour, how your son is doing. You just have Sam. And the family. And your fears. And the unknown.
Chapter 2 has officially begun for Sam. In this chapter, I hope to understand how Sam can battle his way through the rest of the pulmonary hypertension and to get us to a place where he "had" the disease, instead of "has" it. And I am so grateful that Sam got healthy enough to confidently answer the question of "if/when will my baby come home?" I just hope that he...and we...have the strength to face, fight, and struggle to answer the question "if/when will Sam be healed?" Because that's currently a question that doesn't have an answer.
And I need one.
Brad
Sunday, September 29, 2013
Saturday, September 28, 2013
Saving Sam (Chapter 1.27): The road not taken
The Road Not Taken
BY ROBERT FROST
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
Seventeen days ago, I'm not sure I could have looked at Sam's journey as the one we were clearly meant to be on. Oh, I surely saw two paths diverging - one that all the well babies take and the one the Sam chose. But it has felt like a punishment up to this point. We've wondered what we possibly did wrong in the months leading up to Sam's birth to put a strain on his heart, his lungs, and his life. But today, of all days, I feel like I'm starting to understand that this path was taken for a reason. No, I'm not talking about spiritual influence outside of Elisa, Sam, or me. It's as if, right in this moment, Sam's presence in our life was destined to take us down this road that had yet to be trodden on. Lessons needed to be learned. Perspectives changed. Outlooks reshaped. Hope tested. Hope renewed.
I sit, writing what is something like my 25th blog post, but I don't write while at the hospital. I don't write it while waiting for the next feeding time to arrive. I don't write it with a sense of fear and dread. I write from my bedroom, while my beloved Elisa is sitting in Sam's room...holding Sam. Samuel Ryan Pierce - the kid that now shares my middle name, with feet and toes that Elisa already is making fun of - he's home. Finally. This first path ended at the same location as every well baby does...home. But Sam took the scarier, more unknown path. And he did it, I'm sure, because he needed to. And we needed him to. Even if I'm still unsure why.
But I'm getting ahead of myself, because Chapter 1 of our story still needs some catching up. After all, when you last left us, I was sitting in a hospital room as we tried to get comfortable with the monitors. So we start the conclusion of Chapter 1, back in that room. Listening for beeps. We actually stayed for 7 hours. I think, after this experience, you start to lose track of time. It surely didn't feel like 7 hours. Time passes so quickly that I'm still trying to look at a calendar and understand what day it is. Through the 7 hours, Elisa got some sleep. We watched a bunch of Friends episodes, and we each got to hold the little rugrat. At 11:00pm, we expected that we could feed Sam and get home by 11:30. We had made the conscious decision to stay home for the 2:00am and 5:00am feedings to try to get some sleep before Sam's homecoming. Again, I think Sam is smarter than we all realize. He decided to take an hour to eat. By the end, I was starting to come out of my tired phase. Sam, on the other hand, was sleepily content. This was the longest feeding we had experienced in the last week or so. Still testing us, little buddy.
I awoke to a text message at 7:30am. No, it wasn't the NICU. We hadn't heard a peep from them, so we figured that Sam was being a little champ. No, this text was from my Mom. Miles, who had been battling a cold, had woken at 2:00am with a croupy sounding cough. Nothing like getting your daily dose of panic 30 seconds after you wake up! That gets the blood flowing! So Elisa and I made plans to go to Sam's 8:00am feeding and then I would take Miles to After Hours Medical. We didn't fee like we could take a chance with croup on Sam's first day home. Sam's feeding at 8:00am went well - it was incredibly comforting to have the nurse say "he looks SO great!" on your going home day. So Elisa dropped me back at home to get the car, and I headed off to the Urgent Care. I met a smiling little Miles there. The model of cuteness, Miles looked bright eyed and happy. When we got to the room to have Miles examined, he calmly sat on the exam table. He let the doctor hear him breath, check his ears, his mouth, do a strep test, etc. And was so polite about it. Honestly, when a doctor exclaims that he wishes every little child was as helpful, you know you have a little slice of controlled heaven. Thankfully, it doesn't appear that he has croup, and we nixed any chance of strep. It gave us a level of calm to know that Miles was just getting over a virus. Plus, I grabbed a handful of kid's masks. Hey, the trip was worth it after all!
I sent Miles and Lukas off to swimming lessons and I ran home. Elisa had a very important errand to run (and to pick up coffee, of course!), so I spent an hour cleaning up the house. With Sam coming home, I figured it was time to organize a bit. The house had gotten away from us, after all. Elisa, on the other hand, got us coffees and went to Banbury Cross Donuts. Before Sam was born, Elisa and I had decided that I would go and buy Banbury donuts to have in the hospital room for visitors. After Sam's day of delivery, clearly we took the road less traveled. We had no desire to buy donuts. We didn't feel like celebrating. Instead, with Sam graduating from NICU, we took that idea and paid it forward. We bought two dozen donuts and I wrote a thank you card to all of the NICU staff for taking such great care of our little Sam. Even in my most frustrated moments with the doctors, the nurses were generally wonderful. I even tried to name all of the nurses that had looked after Sam - I think I stopped at 15, and I know I missed some. When we arrived to feed (and pick up) Sam, I delivered the note and the donuts to the front desk. The look on her face...how grateful she was and how she said that we didn't need to do it...made me realize that this is probably not something that happens a lot in the NICU. When we went into Level 2 NICU for the last time, Joyce (one of our favorite nurses) and joked that even though Sam was going home, we were not allowed to take the nursing curtains. I told her that I thought it was a parting gift. After they found out about the donuts, Joyce said that she had changed her mind, and she felt Banbury was worth one nursing curtain (albeit the one with broken wheels). I respectfully declined. Another nurse came up and said that if we were going to bring Banbury Cross donuts on every graduation day for Sam, they were just going to hold onto him each day. It would keep the donuts flowing.
After Sam had eaten and the nursing curtains were put away, Dr. Lupine gave us all of Sam's medical records to take with us to his Cardiology appointment on Monday. He covered a couple very helpful pieces. 1) he put Sam on vitamins, so each night, we have to give him nasty tasting vitamins that he'll probably spit out. 2) For the last day, he was worried about Sam's weight gain so he was wanting us to fortify the breastmilk with any bottle feedings. Apparently, Sam went from 8 lb. 12 oz. to 9 lbs. 2 oz. in the span of two days. The Dr. stated that we probably didn't need to fortify anymore. 3) I asked about the oxygenation monitor and Dr. Lupine stated that we only needed to use it when we weren't in the room with him, or when he was sleeping. No trying to have it working while we were at the grocery store or in the car. That brought a great sense of relief. Apparently, the monitor isn't for the doctors or their worry. It's for us and is meant to give us a level of confidence so that we can do things...you know, like sleep. Dr. Lupine wished us luck, and we worked with Deb (stripy socks nurse!) to collect our things and pass Sam's last little tests. He looked great and it was wonderful to see him lose the monitors. Elisa bundled him into the car seat, Deb carried him out, and before we knew it, we were hugging her and driving away. We were leaving St. Mark's with no plans to return. It was a fantastic feeling.
Getting home and presenting Sam to the boys was equally amazing. Lukas and Miles were sitting together on the couch, staring at the door. They both came up to him and welcomed him home. Due to Miles' cold, we gave him a little Mickey doctor's mask and Lukas and Miles sat and held their baby brother together. Elisa and I worked to figure out the oxygen (it took some time and rework) and we started to settle into home life. Again, as I write this, I am sitting on the edge of my bed. Sam is sleeping in his bassinette, with his monitor happily showing that he's doing great. Elisa, Miles, and Lukas are asleep next to me. I can't tell you how delightful a simple afternoon nap feels on a Saturday afternoon.
For the rest of today, we will relax as a family and start the bonding process between the fab five. But we also know that many of you want to see Elisa and Sam. And we'd love to have you. So a few things on visitation. First, we do plan on having a celebratory open house in the coming weeks. We just need to get a lay of the land with the Cardiologist and Pediatrician before doing so. If you want to come before, we'd love to see you. We just ask you to follow a couple of requests. We do have a NICU baby, after all:
- Please call before you come. That way, we can make sure we're alert, presentable, and available
- The boys tend to start their bedtime routines at around 7:00pm - any visiting before that is fine
- If you have any sense or feeling that you are sick, we ask you to wait to visit. The last thing Sam needs is a virus!
- If you're feeling better but don't want to take chances, we have lots of hand sanitizer and adult/child doctors's masks
- Don't be afraid to come see us. We are so grateful for the support and would love to see you.
- If you don't want to come now, look for more info on an open house in the coming weeks
I do want to stress that this is simply the end of Chapter One. We don't know what new scares, hopes, and realities await as we transition from NICU to two new doctors that are focused on getting Sam healthy for life. And I plan to continue to blog, to keep people updated and to keep me as sane (or less insane) as possible.
But, for the first time in 17 days, I actually feel like we're meant to be on this path. We're meant to learn some things about Sam, our family, and ourselves. We've already learned about the amazing family, friends, and acquaintances that we have. You have been wonderful and every "Like", comment, private message, text message, and phone call have been appreciated and have helped us through. I'm not sure where we go next. I don't know if it will be easy or difficult. But I do know that Sam started his life by staring down two roads and choosing the one less traveled by. For him. For us. And something that will be with us forever.
Sam chose the road not taken. And that has made all the difference.
Brad
Friday, September 27, 2013
Saving Sam (Chapter 1.26): What the *beep*!?
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
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
Thursday, September 26, 2013
Saving Sam (Chapter 1.25): Sam's coming home
Three words that I have wanted to be able to say out loud (and type into the blogosphere) for the last 15 days. Three words that mean a greater sense of normalcy (beyond our episodes of Friends). Three words that spell recovery and healing. Three words that signifies that long delayed uniting of the Fab Five. Three words that weren't easy to come by. Three words brought forth by a lioness and a lion. Three words to celebrate.
Sam's coming home.
We arrived for our 2:00pm feeding, and for the first time in two weeks, I didn't have an upset stomach. Perhaps I had started to cleanse my body of the toxins of helplessness and feeling like a victim to a nightmare that I had not chosen. Instead, I felt focused, empowered, and ready. I was going to get answers. I was going to understand. I was going to get him home. In the process, and in sitting with Dr. Lupine for 30 minutes, some of what he said wasn't easy to hear. Some new pieces of information were painful. It was difficult to understand the fallacy in this last week's activities. Others were a tonic to the heartbreak...hope for Sam's future and his current prognosis. Others were cautionary, helping to pave the next steps in Sam's (and our) life. I said in my very first post about Sam that his was a long story to be written. We simply are starting to conclude Chapter 1, and move onto Chapter 2.
At a higher level of oxygen, Sam had his third great feeding in a row. 17 minutes after he started, we moved the nursing partitions, gave the little man some love, and headed to sit with Dr. Lupine. Keep in mind that Dr. Lupine was the very neonatologist we ever encountered in the St. Mark's NICU. Two weeks ago, he looked at us and uttered the phrase "pulmonary hypertension". He told us that Sam would recover and would probably be out in a week. He was the one to diagnose what Sam was battling. Two weeks later, 3 other doctors had passed through our lives. With each change, the goals, actions, and hopes of Sam's recovery also changed. Now we were back to the beginning. And Dr. Lupine started in an unexpected place.
Apologies
Instead of jumping right into what Sam was battling, Dr. Lupine said he was sorry. He apologized for scaring us at the 11:00am feeding. He said he should have looked at the files before giving us any information. He apologized for not following up on Sam's case once he was off call and working up at Primary Children's hospital. It was he who had ordered the Nitrous Oxide, with the expectation that Sam would kick it and would come home quickly. He apologized for leaving us frustrated and without answers - and said that if it were his child, he would have felt the same way and that is never how they hope to have parents feel.
Sam's Diagnosis
Dr. Lupine took the time to actually draw a picture of what Sam's been battling. I won't attempt to draw in a blog post, but I will attempt to explain. A baby's heart and lungs act as a sort of pumping station for the rest of the body. Outside of the womb, blood enters the right side of the heart and is pumped into the lungs, where the blood is oxygenated. The blood then pumps to the left side of the heart and is sent to the various parts of the body to provide required oxygen. In the womb, only 5-15% of the blood actually goes to the lungs, as the baby has yet to breath. Instead, there is a hole between the sides of the heart that is open and allows the blood to be shunted (thus, skipping the lungs for the most part).
When a baby is born, the lungs are supposed to fill with blood. The vessels between the heart and lungs are supposed to open. And the hole closes, as shunting is no longer required. A couple weeks before Sam was born, his heart was already working overtime. We know this because at the first echocardiogram, they showed severely restricted vessels from heart to lungs and a severely dilated right side of the heart. That couldn't have happened in the day since he was born. This had been happening for awhile, meaning that Sam's heart was already struggling to even get the 5-15% of blood to the lungs before birth.
They measure pressure in the heart and vessels by a percentage. Sam's first echocardiogram had the pressure in the 70s. When Sam's second echocardiogram came back, there was improvement, but not enough for the doctors to feel comfortable. Enter the Nitrous Oxide. From the third to the fourth echocardiogram, there was tremendous progress. The final echocardiogram recorded a high percentage of 44%. Dr. Lupine stated that we were really looking for a pressure under 40%. So he was very, very close but not quite there yet.
Interestingly enough, I always wanted Sam's hole to close in his heart so that I had one less thing to worry about. Dr. Lupine informed us that the closing of the hole at the fourth echo was a sign that Sam's pumping station was starting to work appropriately. If the hypertension and pressure still existed in the vessels from heart to lungs, the hole would remain open...because it would need the blood to go somewhere. That closing is a sign of Sam's improved health and the continued resolution of the pulmonary hypertension. There is every expectation that the resolution will continue, albeit slowly. Sam's condition is unique in that some of the dilation and pressure was happening before Sam was even born. He has more to recover from than a typical PPHN patient (even if he didn't appear to be as severe from the outside looking in).
As to the cause, Dr. Lupine walked through some common things - anti-depressant drugs, ibuprofen, pulmonary issues with the mother, and stated that none of those causes fit Sam's case. He believes that Sam's hypertension is "idiopathic", meaning that it has unknown causes. We'll probably never know why this happened to our little fighter.
The fallacy
If there was anything that was absolutely painful to hear, it was how the other neonatologists (and Dr. Lupine's lack of involvement) had actually put more pressure and difficulty onto Sam. Dr. Lupine expressed that the oxygen support that he is receiving is actually a critical piece to his continued improvement. Oxygen naturally will open up the vessels and take pressure off of his lungs and heart. By Lupine's admission, if he was in charge the whole time, he would have told us that home oxygen was definitely going to be in the cards. As he phrased it, "why would you take away the one thing that is helping him the most right now?" And that's what was painful. We have spent the last week trying to wean Sam from oxygen. We had been convinced that this was the next milestone to hit. Hell, I'd even been tracking his volumes on the blog! However, as we have been getting to less and less oxygen, we've just been robbing Sam of something that is helping him to continue to resolve the lasting pulmonary hypertension. The fact that two doctors looked at us in the faces and told us that our end goal was full weaning was hard. Dr. Lupine saying that it was the wrong course of action was painful. We'd been hoping for something that was causing Sam to work harder...and to do so needlessly.
Sam's Prognosis
After that bitter pill was slowly swallowed (the lion both roared in my head from anger and whimpered in the corner from guilt), we started talking about where Sam was going next. Dr. Lupine reiterated that Sam was getting better and was showing every sign that full eradication of the pulmonary hypertension was underway. What we needed to do now was to get him home, still on oxygen, still watching his stats, and beginning the work with Dr. Day and cardiology. At Monday's appointment, Dr. Lupine expects that Sam will receive another echocardiogram. He also expects Sam to be given Sildenafil (see Viagra) to help Sam's continued progress. The first echocardiogram showed the pressure in Sam's vessels and the dilation in his heart to be "severe". Now that's a word we NEVER heard from any doctor. I don't even think we knew how bad Sam was. The fourth echocardiogram, however, showed both the pressure and dilation to be labeled "mild". My, how far he had already come. The next steps are to go from mild to "nonexistent", which Dr. Lupine states can take a couple months. We will work with the Cardiologist and our Pediatrician to build out a plan for Sam's care, continued battling of the PPHN, and his eventually weaning from oxygen. But nothing (at this point) indicates that Sam won't fully recover from this. Indeed, the fact that he's eating like a champ, requiring less oxygen, and is alert and gaining weight is a combination of signs that show that he's winning the battle. He's just taking his time.
Our fear of home
Elisa asked Dr. Lupine how we could possibly take Sam home and not feel like we were sitting with a ticking time bomb. It was a great question, and one that Dr. Lupine gracefully handled. As he stated, not a day has gone by (and we've had 15 of them!) that Sam hasn't improved. Even before the Nitrous Oxide, Sam was making strides. And the fact that he's never slipped backwards should give us confidence that the trajectory will not change. Sam will continue to improve. With the combined care of Dr. Day and Dr. Moskowitz, Dr. Lupine feels confident that Sam will beat this and live a completely normal life. Surely, things can change as we start to explore with Dr. Day, but the outlook is positive and we don't have to go home, frightened that Sam is going to scare the living hell out of us.
Going home
Once we all accepted that Sam going home with oxygen was the prudent and appropriate thing (as opposed to the horrific alternative that we had viewed it as before), it was time to start talking about how we get our fighter home. The first step was to order the oxygen and monitoring equipment that will become a temporary resident in our bedroom and home. Second, is to transition Sam to an oxygen tank so that the neonatologist can determine the appropriate oxygen needs for Sam when he leaves. That transition has already taken place. The next step was to schedule an afternoon/evening where we could hole up in the guest room with Sam. The plan is to set up the equipment (along with monitors that feed directly into the NICU) and we can get used to the beeping, buzzing, and alarms that we will encounter when Sam is home. We get the added benefit of being able to calibrate the home machines with the NICU machines to make sure they are saying the same thing. That's scheduled to take place tomorrow evening. If that goes well, the Neonatologist hopes to send Sam home on Saturday. Suddenly, September 11th and September 28th will have unique and special meanings for us going forward. Sam's then set to meet with Dr. Day on Monday the 30th at 9:00am and we can begin to understand how we (Cardiologist, Pediatrician, Lion, Lioness) can continue Sam's trajectory for improvement.
So that's the story - as we know it right now. What a day. What a group of 15 days. What a nightmare. But we're slowly starting to see through the fog. Remember that light at the end of the tunnel that we talked about? Yep, it's shining a little brighter tonight.
For 15 days, my greatest wish has been to utter three little words. Three words that would let me show Lukas that Sam really did exist. Three words to wipe away Elisa's tears and sense of loss at not having her little man by her side. Three words to see the delight in Miles' face that he would have a new playmate. Three words to allow me to realize that soon, I'll have my wife and three boys on the couch while we watch football together (yes, Elisa has even said she's going to have to develop a love for the game). Three words that allow me to breathe. Three words that take away some of the feelings of helplessness. Three words that give me hope. Three words to celebrate. And maybe one extra word to acknowledge the last 15 days.
Sam's coming home...finally.
Brad
Sam's coming home.
We arrived for our 2:00pm feeding, and for the first time in two weeks, I didn't have an upset stomach. Perhaps I had started to cleanse my body of the toxins of helplessness and feeling like a victim to a nightmare that I had not chosen. Instead, I felt focused, empowered, and ready. I was going to get answers. I was going to understand. I was going to get him home. In the process, and in sitting with Dr. Lupine for 30 minutes, some of what he said wasn't easy to hear. Some new pieces of information were painful. It was difficult to understand the fallacy in this last week's activities. Others were a tonic to the heartbreak...hope for Sam's future and his current prognosis. Others were cautionary, helping to pave the next steps in Sam's (and our) life. I said in my very first post about Sam that his was a long story to be written. We simply are starting to conclude Chapter 1, and move onto Chapter 2.
At a higher level of oxygen, Sam had his third great feeding in a row. 17 minutes after he started, we moved the nursing partitions, gave the little man some love, and headed to sit with Dr. Lupine. Keep in mind that Dr. Lupine was the very neonatologist we ever encountered in the St. Mark's NICU. Two weeks ago, he looked at us and uttered the phrase "pulmonary hypertension". He told us that Sam would recover and would probably be out in a week. He was the one to diagnose what Sam was battling. Two weeks later, 3 other doctors had passed through our lives. With each change, the goals, actions, and hopes of Sam's recovery also changed. Now we were back to the beginning. And Dr. Lupine started in an unexpected place.
Apologies
Instead of jumping right into what Sam was battling, Dr. Lupine said he was sorry. He apologized for scaring us at the 11:00am feeding. He said he should have looked at the files before giving us any information. He apologized for not following up on Sam's case once he was off call and working up at Primary Children's hospital. It was he who had ordered the Nitrous Oxide, with the expectation that Sam would kick it and would come home quickly. He apologized for leaving us frustrated and without answers - and said that if it were his child, he would have felt the same way and that is never how they hope to have parents feel.
Sam's Diagnosis
Dr. Lupine took the time to actually draw a picture of what Sam's been battling. I won't attempt to draw in a blog post, but I will attempt to explain. A baby's heart and lungs act as a sort of pumping station for the rest of the body. Outside of the womb, blood enters the right side of the heart and is pumped into the lungs, where the blood is oxygenated. The blood then pumps to the left side of the heart and is sent to the various parts of the body to provide required oxygen. In the womb, only 5-15% of the blood actually goes to the lungs, as the baby has yet to breath. Instead, there is a hole between the sides of the heart that is open and allows the blood to be shunted (thus, skipping the lungs for the most part).
When a baby is born, the lungs are supposed to fill with blood. The vessels between the heart and lungs are supposed to open. And the hole closes, as shunting is no longer required. A couple weeks before Sam was born, his heart was already working overtime. We know this because at the first echocardiogram, they showed severely restricted vessels from heart to lungs and a severely dilated right side of the heart. That couldn't have happened in the day since he was born. This had been happening for awhile, meaning that Sam's heart was already struggling to even get the 5-15% of blood to the lungs before birth.
They measure pressure in the heart and vessels by a percentage. Sam's first echocardiogram had the pressure in the 70s. When Sam's second echocardiogram came back, there was improvement, but not enough for the doctors to feel comfortable. Enter the Nitrous Oxide. From the third to the fourth echocardiogram, there was tremendous progress. The final echocardiogram recorded a high percentage of 44%. Dr. Lupine stated that we were really looking for a pressure under 40%. So he was very, very close but not quite there yet.
Interestingly enough, I always wanted Sam's hole to close in his heart so that I had one less thing to worry about. Dr. Lupine informed us that the closing of the hole at the fourth echo was a sign that Sam's pumping station was starting to work appropriately. If the hypertension and pressure still existed in the vessels from heart to lungs, the hole would remain open...because it would need the blood to go somewhere. That closing is a sign of Sam's improved health and the continued resolution of the pulmonary hypertension. There is every expectation that the resolution will continue, albeit slowly. Sam's condition is unique in that some of the dilation and pressure was happening before Sam was even born. He has more to recover from than a typical PPHN patient (even if he didn't appear to be as severe from the outside looking in).
As to the cause, Dr. Lupine walked through some common things - anti-depressant drugs, ibuprofen, pulmonary issues with the mother, and stated that none of those causes fit Sam's case. He believes that Sam's hypertension is "idiopathic", meaning that it has unknown causes. We'll probably never know why this happened to our little fighter.
The fallacy
If there was anything that was absolutely painful to hear, it was how the other neonatologists (and Dr. Lupine's lack of involvement) had actually put more pressure and difficulty onto Sam. Dr. Lupine expressed that the oxygen support that he is receiving is actually a critical piece to his continued improvement. Oxygen naturally will open up the vessels and take pressure off of his lungs and heart. By Lupine's admission, if he was in charge the whole time, he would have told us that home oxygen was definitely going to be in the cards. As he phrased it, "why would you take away the one thing that is helping him the most right now?" And that's what was painful. We have spent the last week trying to wean Sam from oxygen. We had been convinced that this was the next milestone to hit. Hell, I'd even been tracking his volumes on the blog! However, as we have been getting to less and less oxygen, we've just been robbing Sam of something that is helping him to continue to resolve the lasting pulmonary hypertension. The fact that two doctors looked at us in the faces and told us that our end goal was full weaning was hard. Dr. Lupine saying that it was the wrong course of action was painful. We'd been hoping for something that was causing Sam to work harder...and to do so needlessly.
Sam's Prognosis
After that bitter pill was slowly swallowed (the lion both roared in my head from anger and whimpered in the corner from guilt), we started talking about where Sam was going next. Dr. Lupine reiterated that Sam was getting better and was showing every sign that full eradication of the pulmonary hypertension was underway. What we needed to do now was to get him home, still on oxygen, still watching his stats, and beginning the work with Dr. Day and cardiology. At Monday's appointment, Dr. Lupine expects that Sam will receive another echocardiogram. He also expects Sam to be given Sildenafil (see Viagra) to help Sam's continued progress. The first echocardiogram showed the pressure in Sam's vessels and the dilation in his heart to be "severe". Now that's a word we NEVER heard from any doctor. I don't even think we knew how bad Sam was. The fourth echocardiogram, however, showed both the pressure and dilation to be labeled "mild". My, how far he had already come. The next steps are to go from mild to "nonexistent", which Dr. Lupine states can take a couple months. We will work with the Cardiologist and our Pediatrician to build out a plan for Sam's care, continued battling of the PPHN, and his eventually weaning from oxygen. But nothing (at this point) indicates that Sam won't fully recover from this. Indeed, the fact that he's eating like a champ, requiring less oxygen, and is alert and gaining weight is a combination of signs that show that he's winning the battle. He's just taking his time.
Our fear of home
Elisa asked Dr. Lupine how we could possibly take Sam home and not feel like we were sitting with a ticking time bomb. It was a great question, and one that Dr. Lupine gracefully handled. As he stated, not a day has gone by (and we've had 15 of them!) that Sam hasn't improved. Even before the Nitrous Oxide, Sam was making strides. And the fact that he's never slipped backwards should give us confidence that the trajectory will not change. Sam will continue to improve. With the combined care of Dr. Day and Dr. Moskowitz, Dr. Lupine feels confident that Sam will beat this and live a completely normal life. Surely, things can change as we start to explore with Dr. Day, but the outlook is positive and we don't have to go home, frightened that Sam is going to scare the living hell out of us.
Going home
Once we all accepted that Sam going home with oxygen was the prudent and appropriate thing (as opposed to the horrific alternative that we had viewed it as before), it was time to start talking about how we get our fighter home. The first step was to order the oxygen and monitoring equipment that will become a temporary resident in our bedroom and home. Second, is to transition Sam to an oxygen tank so that the neonatologist can determine the appropriate oxygen needs for Sam when he leaves. That transition has already taken place. The next step was to schedule an afternoon/evening where we could hole up in the guest room with Sam. The plan is to set up the equipment (along with monitors that feed directly into the NICU) and we can get used to the beeping, buzzing, and alarms that we will encounter when Sam is home. We get the added benefit of being able to calibrate the home machines with the NICU machines to make sure they are saying the same thing. That's scheduled to take place tomorrow evening. If that goes well, the Neonatologist hopes to send Sam home on Saturday. Suddenly, September 11th and September 28th will have unique and special meanings for us going forward. Sam's then set to meet with Dr. Day on Monday the 30th at 9:00am and we can begin to understand how we (Cardiologist, Pediatrician, Lion, Lioness) can continue Sam's trajectory for improvement.
So that's the story - as we know it right now. What a day. What a group of 15 days. What a nightmare. But we're slowly starting to see through the fog. Remember that light at the end of the tunnel that we talked about? Yep, it's shining a little brighter tonight.
For 15 days, my greatest wish has been to utter three little words. Three words that would let me show Lukas that Sam really did exist. Three words to wipe away Elisa's tears and sense of loss at not having her little man by her side. Three words to see the delight in Miles' face that he would have a new playmate. Three words to allow me to realize that soon, I'll have my wife and three boys on the couch while we watch football together (yes, Elisa has even said she's going to have to develop a love for the game). Three words that allow me to breathe. Three words that take away some of the feelings of helplessness. Three words that give me hope. Three words to celebrate. And maybe one extra word to acknowledge the last 15 days.
Sam's coming home...finally.
Brad
Saving Sam (Chapter 1.24): They've met the lioness. Say hello to the lion.
I'd prefer to be writing this blog post with a cute little story regarding our exhaustion, how adorable our other two children are, or something funny that inconveniently happened through the course of our NICU stay. But that mood...that level of clarity and logic is sorely missing at this point. We're well into Day 15 of Sam's NICU stay and all it took was one small event for me to start to morph into an altogether more frightening creature. I marveled, in the past, at Elisa's ability to be the lioness. She could slyly stalk her prey and, using her cunning, could get results. But you know what they say about lions. They travel in packs, and it's about time that the lioness gets her lion. Because I'm not playing this game anymore.
The lion started stirring last night. When I arrived at the 11:00pm feeding, I noticed that Sam's oxygen was sitting at 20cc, not 10. I inquired and the nurse told me that it was just a finicky control and she had set it at 10, but sometimes it just moves up and down between the two. Okay. Deep breaths, Brad. I'm sure she's being up front with you. The 2:00am feeding brought about a nurse change. And the new caretaker of our little Sam was little more than an annoyance. I've been around the NICU long enough to know how every other nurse secures the pulse oximeter (the monitor for Sam's oxygenation). This nurse decided that the best placement of it must be on the side of his foot. Yeah, that'll give some good readings. As a result, at the 2:00am and 5:00am feedings, on 20cc of oxygen, his feedings were a beep filled experience. No, we weren't swearing, though we definitely had the desire to do so. The tipping point for me, however, was when Elisa asked the 5:00am nurse why his oxygen was at 20cc. The nurse literally looked at the WRONG oxygen connector. Uhhhh...
How do I know that something was wonky with the readings at night? We arrived at the 8:00am feeding and found an alert, happy, and oxygen saturated boy. His readings routinely hit 100 as he had his best feeding since being born (20 active minutes without a hint of laziness). As we were getting ready to leave, the nurse dropped his oxygen back to 10cc and said she would monitor his progress. You would have thought that this would have tamed the lion. No, it just made me more aggravated at the nighttime nurse. Had we lost time? We returned at 11:00am to disappointment. He had been on 10cc of oxygen for an hour before she turned it up. One step forward, one step back. I was happy to see that he was again awake and had another active feeding, but Elisa and I were back to watching his stats, which tended to hang between 91-95 saturation.
I think the lion, at this point was stretching his legs and getting ready to roam. The tipping point was our brief interaction with Dr. Lupine (he was the first neonatologist Sam had, over two weeks ago). I asked if we could talk to him and he said that 2:00pm would be better. And then he added three statements: 1) "I'm surprised you're still here!" 2) "He is getting better!" and 3) "The pulmonary hypertension still needs to resolve."
I went home fuming. I stood in the kitchen for 30 seconds before I grabbed my cell phone and found the number to our St. Mark's Case Manager. The lion was ready to roar. And roar I did. I explained to the Case Manager the following:
The lion started stirring last night. When I arrived at the 11:00pm feeding, I noticed that Sam's oxygen was sitting at 20cc, not 10. I inquired and the nurse told me that it was just a finicky control and she had set it at 10, but sometimes it just moves up and down between the two. Okay. Deep breaths, Brad. I'm sure she's being up front with you. The 2:00am feeding brought about a nurse change. And the new caretaker of our little Sam was little more than an annoyance. I've been around the NICU long enough to know how every other nurse secures the pulse oximeter (the monitor for Sam's oxygenation). This nurse decided that the best placement of it must be on the side of his foot. Yeah, that'll give some good readings. As a result, at the 2:00am and 5:00am feedings, on 20cc of oxygen, his feedings were a beep filled experience. No, we weren't swearing, though we definitely had the desire to do so. The tipping point for me, however, was when Elisa asked the 5:00am nurse why his oxygen was at 20cc. The nurse literally looked at the WRONG oxygen connector. Uhhhh...
How do I know that something was wonky with the readings at night? We arrived at the 8:00am feeding and found an alert, happy, and oxygen saturated boy. His readings routinely hit 100 as he had his best feeding since being born (20 active minutes without a hint of laziness). As we were getting ready to leave, the nurse dropped his oxygen back to 10cc and said she would monitor his progress. You would have thought that this would have tamed the lion. No, it just made me more aggravated at the nighttime nurse. Had we lost time? We returned at 11:00am to disappointment. He had been on 10cc of oxygen for an hour before she turned it up. One step forward, one step back. I was happy to see that he was again awake and had another active feeding, but Elisa and I were back to watching his stats, which tended to hang between 91-95 saturation.
I think the lion, at this point was stretching his legs and getting ready to roam. The tipping point was our brief interaction with Dr. Lupine (he was the first neonatologist Sam had, over two weeks ago). I asked if we could talk to him and he said that 2:00pm would be better. And then he added three statements: 1) "I'm surprised you're still here!" 2) "He is getting better!" and 3) "The pulmonary hypertension still needs to resolve."
I went home fuming. I stood in the kitchen for 30 seconds before I grabbed my cell phone and found the number to our St. Mark's Case Manager. The lion was ready to roar. And roar I did. I explained to the Case Manager the following:
- Where are we? Two days ago, everything looked good and we were deciding between weaning off of oxygen or doing home oxygen.
- What did Dr. Lupine mean that the pulmonary hypertension needed to resolve itself? We were told over a week ago that the last echocardiogram had shown that the hypertension was resolving and we would not be getting another scan.
- Are we trying to get him off of oxygen or are we concerned about his heart still?
- I felt like we were getting the run around
- I felt like the neonatologists weren't communicating with each other - we got a different view of the world with every shift change
- I needed answers. Now.
I tried to wrap my feelings up in a nice little roar-like bow. 1) If we weren't concerned about the pulmonary hypertension, where did we feel he was with his oxygen progress? Was he stalled or progressing? 2) If we were concerned about the pulmonary hypertension, how did I get him transferred to someone that could fix him and I wanted an explanation as to why they had been so negligent over the last week to not look at his heart again.
The Case Manager exited the call with the promise to call me back after consulting with Dr. Lupine. About 20 minutes later, Dr. Lupine was the one that returned my call. On one hand, I'm proud that I could say that the lion was able to get some answers. However, within the answers are further pieces of information that we had never been provided before. The lion, while not roaring, is pacing.
Dr. Lupine immediately apologized. When he made his comments after the 11:00am feeding, he hadn't reviewed Sam's file. While I appreciate the apology, perhaps you shouldn't provide diagnosis yet. Saying that you haven't had time to review yet is a better answer than making blind comments. But I digress. Among the many things, however, that he told us, here's a rundown:
- Dr. Lupine is surprised that Sam is still here because almost all other cases he has seen have lasted about a week.
- When he hadn't gotten better, "someone should have called me to consult".
- His belief is that Sam's pulmonary hypertension is a more severe case because it didn't start when he was born. Dr. Lupine believes this was happening while he was still in the womb, and because it is more severe, Sam's taking more time to get better.
- Sam should see the cardiologist on Monday.
- Sam will be released with home oxygen in the next few days
- Dr. Lupine reviewed all of the echo results, scans, and Sam's progress. And he said 7-8 times that Sam is getting better. He's just improving at a slower pace, because he was battling this before being born.
- Dr. Lupine works at Primary Children's as well, so he knows everyone up their. He said that Dr. Day had excellent experience with children's pulmonary hypertension and was a great fit for Sam.
- He also had a peer at Primary's by the name of Dr. Noll (sp?). He had called him and expected to consult with him on Sam's case this afternoon to see if there was anything else we could be doing to help him.
- Bottom line, while the progress has been slower, Sam is beating the pulmonary hypertension. And it appears that he can come home, albeit with home oxygen.
The doctor also said that we would be sitting down at 2:00pm so that he could show us what he believes was happening before Sam was born. While this opens an entire new can of worms (what caused it before? Are we looking at other areas of fault now?), it will be helpful to get some pictures of what's happening with Sam and the progress that he's made.
For now, the lion is sitting on the rock, watching and waiting. He has practiced his roar. And he will protect his cub. But a lion uses blunt force...there will be no sly stalking in the grass. No, we're past that point. We gave them a chance to go quietly. Now, we get answers. Now, we get him better. Now, we get Sam home.
Hear us roar.
Brad
Wednesday, September 25, 2013
Saving Sam (Chapter 1.23): Shit just got real
Our 2:00pm feeding was easily our biggest of Sam's entire journey so far. We arrived, hopeful at his continued progress down the oxygen scale, and crossing our fingers that our assertive nurse would take the plunge and see if Sam was ready to breathe fully on his own. We arrived, saw his great stats, and started getting him changed. Almost without prompting, the nurse walked over, and removed the cannula (the thing that goes in his nose to give oxygen). She wanted to see how he would do. I remember thinking, as we were driving in, that this would be a very exciting moment. I would be thrilled and would watch in awe as Sam kicked all sorts of ass.
Yet, that wasn't what happened. Sure, Sam got off the oxygen. But my heart started beating faster. I started to sweat. Elisa noticed that my leg didn't seem to want to settle down from it's up and down dance. I was nervous. It didn't help that Sam's feeding was a cacophony of beeps as, without the oxygen, he was toying dangerously with his oxygenation. Every time it would beep, I'd try to adjust the oxygenation cord, thinking that somehow I could still control the situation. Sam must just be having bad readings, right? Eventually, he settled down, ate, and then we put him in his bed to rest. The next three hours would be telling. After all, it is critical how their oxygenation is when they are sleeping, not when they're awake. Elisa and I walked away and headed for our car. I said to Elisa "shit just got real". Little did I know that three separate instances this evening would slap us into a very clear reality - indeed, things were starting to get real, and Sam's situation, current progress, and future arrival at home all held land mines that we might not have fully comprehended before.
90 minutes of heaven and hell
My goal today between the 2:00pm and 5:00pm feeding was to get a nap. The late evenings are definitely taking their toll, and I thought that while the kids weren't at home, we could get a couple minutes of shut eye. As we went home, we talked about how nervous we were with him off of oxygen. Maybe it was just because it showed us how close we were. I think it's more likely that we were starting to comprehend that Sam was sitting in NICU...and doing everything himself. We came back, watched some Friends (hey, normalcy was definitely needed now!), and I fell asleep. I'm pretty sure Elisa didn't. When I woke, I got a call from our boys, and then a text from my Dad, who was visiting little Sam. He sent a picture. I don't think he knew that the oxygen had been removed, because he didn't mention it in his text. And my heart sunk when the picture clearly showed that Sam's cannula was back in his nose. Elisa and I adjusted, and I was slightly relieved that we found this out before the hospital. It might have been more painful to see it while expecting great things. When we got back to the NICU, the nurse (a new one, of course...not Mrs. Assertive from before) informed us that Sam had made it about 90 minutes before his oxygenation started settling in the 89-90-91 range. While the alarm was set up to accept this, she informed us that the Doctor really wanted Sam's oxygenation to be 92+. So back on the 10cc of oxygen. Back to the cannula. And a step away from home. While she stated that if his saturations held up again, she'd try again, we couldn't help but feel deflated. When the cannula was removed, I think we both saw our baby boy, free of NICU interventions. The step back was a hard one to take.
Reality Training
But that was just the beginning of our night. The boys were off to Grandma's for dinner because Elisa and I needed to check another box off our never ending list of "to do" items so that Sam could come home. Tonight, we needed to attend an infant CPR class. I can only imagine what that class might be like before you have a kid. It's probably the like breastfeeding class. The Dads sit and giggle that they have seen more breasts in a public setting than ever before in their lives. The women are all business, thinking that breastfeeding looks very simple. Then reality strikes. The kid is here and men will never look at breasts the same way. Women realize how difficult breastfeeding truly can be (hmmm...maybe that's why most do it for 3 months and quit). An infant CPR class before a NICU baby would probably be the same. Men would joke about the little mannequin and the plastic bag in their chest. Women would take copious notes, thinking that they were ready for any situation. When you have a NICU baby, however, the Infant CPR training just scares you. Why? Because you know you might actually need the skills. You might be in the situation. You could need to save your baby's life. Elisa and I were quiet and focused during the training. I remember thinking that I was careless to not know this with my other two boys. Shit just got real...again. I do have to thank the other couple for being in the class and giving us a brief period of levity. After CPR training, we learned what to do with a choking baby. As we were practicing, the trainer recommended that we stand. I did. Elisa didn't. The other couple didn't. As we started the process, I looked over at the other Dad. He was certainly giving the choking steps his all. He was just missing the key awareness that you probably shouldn't be letting the baby's head beat against the table. Next time, stand up buddy. Give yourself some room before you really do damage to a kid while trying to save it's life. I wasn't surprised in the least when I saw the mannequin army crawling away from the guy in between videos.
Home is a scary place
Our final lesson of the night, however, made us realize that as much as we want Sam to be home and away from the NICU, there is a scary reality to that end result as well. At the 8:00pm feeding, Elisa was alone, feeding Sam behind her nursing curtains. Sam was happily eating away when he choked on the breast milk. He arched his back. His lips went a little purple. And alarms started ringing throughout Level 2 NICU. Elisa was a champ. She sat him up, patted his back, and Sam recovered almost immediately. By the time the nurse arrived, the alarms had settled and Elisa was simply informing her that he had choked a little and was okay. The nurse left, clearly satisfied that Sam was okay. But Elisa was shaken. The reality of leaving NICU is that you give up the nurses, the monitors, and the beeping that tells you when something *could* be wrong. You're on your own. No beeping. No warnings. Just you, your actions, and a NICU baby that takes on a persona of a fragile porcelain doll, not a bouncing baby that will crash into walls without a scratch. We want Sam home. So badly. But something like this makes us open our eyes - will we be fraught with worry at every cough? Every deep or shallow breath? Every pause before eating? Indeed...shit just got real.
At 2:00pm today, Sam took his first major step to clearing Milestone #3. He was off of oxygen for a full 90 minutes. And instead of feeling invigorated, I felt scared. In the moment, it was scared of a beep that showed that he wasn't quite ready for a world without the cannula. By the end of the night, it is a building worry about Sam, Elisa, and me long after the NICU. When we're home, alone, and trying to keep our little perfect baby boy safe. I can only hope that we keep our wits about us to ensure that Sam is as safe at home as he is in the friendly confines of the NICU.
Yes, shit just got real. Very real. And very, very scary.
Brad
Yet, that wasn't what happened. Sure, Sam got off the oxygen. But my heart started beating faster. I started to sweat. Elisa noticed that my leg didn't seem to want to settle down from it's up and down dance. I was nervous. It didn't help that Sam's feeding was a cacophony of beeps as, without the oxygen, he was toying dangerously with his oxygenation. Every time it would beep, I'd try to adjust the oxygenation cord, thinking that somehow I could still control the situation. Sam must just be having bad readings, right? Eventually, he settled down, ate, and then we put him in his bed to rest. The next three hours would be telling. After all, it is critical how their oxygenation is when they are sleeping, not when they're awake. Elisa and I walked away and headed for our car. I said to Elisa "shit just got real". Little did I know that three separate instances this evening would slap us into a very clear reality - indeed, things were starting to get real, and Sam's situation, current progress, and future arrival at home all held land mines that we might not have fully comprehended before.
90 minutes of heaven and hell
My goal today between the 2:00pm and 5:00pm feeding was to get a nap. The late evenings are definitely taking their toll, and I thought that while the kids weren't at home, we could get a couple minutes of shut eye. As we went home, we talked about how nervous we were with him off of oxygen. Maybe it was just because it showed us how close we were. I think it's more likely that we were starting to comprehend that Sam was sitting in NICU...and doing everything himself. We came back, watched some Friends (hey, normalcy was definitely needed now!), and I fell asleep. I'm pretty sure Elisa didn't. When I woke, I got a call from our boys, and then a text from my Dad, who was visiting little Sam. He sent a picture. I don't think he knew that the oxygen had been removed, because he didn't mention it in his text. And my heart sunk when the picture clearly showed that Sam's cannula was back in his nose. Elisa and I adjusted, and I was slightly relieved that we found this out before the hospital. It might have been more painful to see it while expecting great things. When we got back to the NICU, the nurse (a new one, of course...not Mrs. Assertive from before) informed us that Sam had made it about 90 minutes before his oxygenation started settling in the 89-90-91 range. While the alarm was set up to accept this, she informed us that the Doctor really wanted Sam's oxygenation to be 92+. So back on the 10cc of oxygen. Back to the cannula. And a step away from home. While she stated that if his saturations held up again, she'd try again, we couldn't help but feel deflated. When the cannula was removed, I think we both saw our baby boy, free of NICU interventions. The step back was a hard one to take.
Reality Training
But that was just the beginning of our night. The boys were off to Grandma's for dinner because Elisa and I needed to check another box off our never ending list of "to do" items so that Sam could come home. Tonight, we needed to attend an infant CPR class. I can only imagine what that class might be like before you have a kid. It's probably the like breastfeeding class. The Dads sit and giggle that they have seen more breasts in a public setting than ever before in their lives. The women are all business, thinking that breastfeeding looks very simple. Then reality strikes. The kid is here and men will never look at breasts the same way. Women realize how difficult breastfeeding truly can be (hmmm...maybe that's why most do it for 3 months and quit). An infant CPR class before a NICU baby would probably be the same. Men would joke about the little mannequin and the plastic bag in their chest. Women would take copious notes, thinking that they were ready for any situation. When you have a NICU baby, however, the Infant CPR training just scares you. Why? Because you know you might actually need the skills. You might be in the situation. You could need to save your baby's life. Elisa and I were quiet and focused during the training. I remember thinking that I was careless to not know this with my other two boys. Shit just got real...again. I do have to thank the other couple for being in the class and giving us a brief period of levity. After CPR training, we learned what to do with a choking baby. As we were practicing, the trainer recommended that we stand. I did. Elisa didn't. The other couple didn't. As we started the process, I looked over at the other Dad. He was certainly giving the choking steps his all. He was just missing the key awareness that you probably shouldn't be letting the baby's head beat against the table. Next time, stand up buddy. Give yourself some room before you really do damage to a kid while trying to save it's life. I wasn't surprised in the least when I saw the mannequin army crawling away from the guy in between videos.
Home is a scary place
Our final lesson of the night, however, made us realize that as much as we want Sam to be home and away from the NICU, there is a scary reality to that end result as well. At the 8:00pm feeding, Elisa was alone, feeding Sam behind her nursing curtains. Sam was happily eating away when he choked on the breast milk. He arched his back. His lips went a little purple. And alarms started ringing throughout Level 2 NICU. Elisa was a champ. She sat him up, patted his back, and Sam recovered almost immediately. By the time the nurse arrived, the alarms had settled and Elisa was simply informing her that he had choked a little and was okay. The nurse left, clearly satisfied that Sam was okay. But Elisa was shaken. The reality of leaving NICU is that you give up the nurses, the monitors, and the beeping that tells you when something *could* be wrong. You're on your own. No beeping. No warnings. Just you, your actions, and a NICU baby that takes on a persona of a fragile porcelain doll, not a bouncing baby that will crash into walls without a scratch. We want Sam home. So badly. But something like this makes us open our eyes - will we be fraught with worry at every cough? Every deep or shallow breath? Every pause before eating? Indeed...shit just got real.
At 2:00pm today, Sam took his first major step to clearing Milestone #3. He was off of oxygen for a full 90 minutes. And instead of feeling invigorated, I felt scared. In the moment, it was scared of a beep that showed that he wasn't quite ready for a world without the cannula. By the end of the night, it is a building worry about Sam, Elisa, and me long after the NICU. When we're home, alone, and trying to keep our little perfect baby boy safe. I can only hope that we keep our wits about us to ensure that Sam is as safe at home as he is in the friendly confines of the NICU.
Yes, shit just got real. Very real. And very, very scary.
Brad
Saving Sam (Chapter 1.22): Putting the "normal" in "abnormal"
I still can't wrap my head around the reality that two weeks have passed since little Sam was born. It's weird to be writing this at exactly 12:21pm...Sam's birth time. So many things have just disappeared from our lives...well, at least in terms of normal activities. We try to intersperse our days with some of the routine activities that we did before Sam, but I find that they end up being half-hearted attempts to simply get our minds off of things. We do laundry, but our ironing is piling up. We make dinner, but when faced with actually cooking, I do calculations in my head regarding the easiest meal possible without looking like I'm a lazy SOB. Even when we eat, our standards get a bit less. Last night, we had corn with our meal and I found it delightfully okay that the only clean utensil I had was an Elmo spoon. At lunch today, Elisa was eating the leftover salad that we had and didn't even bother to put it in a different bowl. She just poured the dressing on and ate from the original salad bowl.
As a major football fan, I even watched the lead up to the big rivalry game at a distance. When the game was on, I opted to try to get an hour of sleep from halftime into the third quarter than to watch the game (thankfully, I was at NICU, feeding Sam, when the Utes won). On a side note, the Utes winning a 4th straight rivalry game still felt oddly satisfying, even in our current situation. We don't run errands. I fell asleep sitting next to Lukas as he did his reading and it was rather awkward when he'd hit a word he needed help with and would have to nudge me. I'd jerk awake, probably saying something unrelated like "no, I didn't bring the toaster with me to the bowling alley!" before I'd shake the cobwebs, help him with the word, and drift right back into a lazy sleep.
But through it all, Elisa and found our little slice of normalcy. Something we could do while we sat and waited. And worried. And, strangely, something that has made me laugh when I shouldn't be laughing. Laugh when I am crying. Laugh when I'm too exhausted to actually sleep. Thank God for Friends. We've always been fans of the old sitcom (we own all 10 seasons on DVD), but it was a collection that always sat in the corner without use. Sure, we'd get excited about re-watching them and make it 6 episodes into Season One before giving up the dream. But when we were vagrants at the hospital, it was Elisa's idea to grab the first couple seasons. It would give us something to focus on while we waited for our next visit or next word from the NICU. Sure enough, we started with Season One and we're almost complete with Season Two. It sounds strange. It might even sound dumb that a 10 year old sitcom could mean so much to us through such a trying time. But it is our normal in a very abnormal situation.
I was physically crying about Sam when the episode about Joey's tailor came on and he was educated "that's how they measure pants...in prison!" I laughed out loud through the tears. My stomach was rolling with worry the other day when we watched the Friends Super Bowl episode where Julia Roberts coerces Chandler to wear her panties, and then leaves him in a restaurant bathroom without clothes. We just finished the episode where Monica and Rachel are fighting over the last condom, and Chandler's weird roommate (Eddie) put a goldfish cracker in his aquarium and named him "Chandler". Friends, for me, has given me a slice of something that was here before Sam. Laughter. Something to grab our attention. Something normal. And when your life is as abnormal as you have ever experienced, sometimes it is critical to find a divining rod for your sanity. Friends has been the normal in our abnormal and I'll never look at the show (or those DVDs) the same way.
Speaking of our "new normal", today is another day of wishing and hoping for progress. I am immensely grateful to the last two nurses we have had (Chelsey and Nannette) because they are assertive towards Sam's weaning. Usually, we make progress during the day and then go into a holding pattern at night. Not last night. Not today. After Elisa pushed our nurse into dropping Sam to 30cc of oxygen at 5:00pm, Chelsey assured us that she would keep the push on. When I went in at 2:00am, she had just lowered his oxygen to 20cc. When we arrived for our 8:00am feeding, Nannette was already fidgeting with the dial to try to get him down to 10cc. And that's where we stand now. It was music to my ears when Elisa asked "so what happens after 10?" and Nannette replied "I take him off of it!" I'm happy to say (at least right now, barring any relapse) that Sam is making excellent progress in this 48-hour weaning period. Who knows...maybe he will try his hand at no oxygen today, tonight, or tomorrow.
We also got another visit from the Case Manager, and I couldn't help but smile at our own assertiveness as parents. The Case Worker still seemed to be in awe of the fact that I had secured a Cardiology appointment with Dr. Day for next Monday. She alerted us that she had talked to Dr. Peterson about the appointment and added "I told her, even if we are sending you home on Sunday, you could still make that appointment!" Aha. The hospital's end game. At least, that's my theory. I've placed my bets with Elisa that Sam will come home this Sunday, simply because we now have a critical and hard to get Cardiology appointment on Monday morning. Maybe I'm wrong. But I would think that you'd look at his progress and wonder if the magic day wasn't going to be Friday or Saturday. Instead, it feels like we've strategically placed a bookend on the week. We don't want to lose that appointment and I don't think St. Mark's wants to either.
Another day, another step closer to Sam being home, to us stopping the constant running to the hospital. Another step closer to normal. Now, if you'll excuse me, I have some Friends to watch. Because it's the one where Eddie won't move out (and shockingly, Chandler is my favorite Friend and I remember him to be very funny in this episode). Today, like every other day for the past two weeks, feels abnormal. I'm in desperate need of my 21 minutes of normal. I need to not think. I need to laugh. I need to just be.
Brad
As a major football fan, I even watched the lead up to the big rivalry game at a distance. When the game was on, I opted to try to get an hour of sleep from halftime into the third quarter than to watch the game (thankfully, I was at NICU, feeding Sam, when the Utes won). On a side note, the Utes winning a 4th straight rivalry game still felt oddly satisfying, even in our current situation. We don't run errands. I fell asleep sitting next to Lukas as he did his reading and it was rather awkward when he'd hit a word he needed help with and would have to nudge me. I'd jerk awake, probably saying something unrelated like "no, I didn't bring the toaster with me to the bowling alley!" before I'd shake the cobwebs, help him with the word, and drift right back into a lazy sleep.
But through it all, Elisa and found our little slice of normalcy. Something we could do while we sat and waited. And worried. And, strangely, something that has made me laugh when I shouldn't be laughing. Laugh when I am crying. Laugh when I'm too exhausted to actually sleep. Thank God for Friends. We've always been fans of the old sitcom (we own all 10 seasons on DVD), but it was a collection that always sat in the corner without use. Sure, we'd get excited about re-watching them and make it 6 episodes into Season One before giving up the dream. But when we were vagrants at the hospital, it was Elisa's idea to grab the first couple seasons. It would give us something to focus on while we waited for our next visit or next word from the NICU. Sure enough, we started with Season One and we're almost complete with Season Two. It sounds strange. It might even sound dumb that a 10 year old sitcom could mean so much to us through such a trying time. But it is our normal in a very abnormal situation.
I was physically crying about Sam when the episode about Joey's tailor came on and he was educated "that's how they measure pants...in prison!" I laughed out loud through the tears. My stomach was rolling with worry the other day when we watched the Friends Super Bowl episode where Julia Roberts coerces Chandler to wear her panties, and then leaves him in a restaurant bathroom without clothes. We just finished the episode where Monica and Rachel are fighting over the last condom, and Chandler's weird roommate (Eddie) put a goldfish cracker in his aquarium and named him "Chandler". Friends, for me, has given me a slice of something that was here before Sam. Laughter. Something to grab our attention. Something normal. And when your life is as abnormal as you have ever experienced, sometimes it is critical to find a divining rod for your sanity. Friends has been the normal in our abnormal and I'll never look at the show (or those DVDs) the same way.
Speaking of our "new normal", today is another day of wishing and hoping for progress. I am immensely grateful to the last two nurses we have had (Chelsey and Nannette) because they are assertive towards Sam's weaning. Usually, we make progress during the day and then go into a holding pattern at night. Not last night. Not today. After Elisa pushed our nurse into dropping Sam to 30cc of oxygen at 5:00pm, Chelsey assured us that she would keep the push on. When I went in at 2:00am, she had just lowered his oxygen to 20cc. When we arrived for our 8:00am feeding, Nannette was already fidgeting with the dial to try to get him down to 10cc. And that's where we stand now. It was music to my ears when Elisa asked "so what happens after 10?" and Nannette replied "I take him off of it!" I'm happy to say (at least right now, barring any relapse) that Sam is making excellent progress in this 48-hour weaning period. Who knows...maybe he will try his hand at no oxygen today, tonight, or tomorrow.
We also got another visit from the Case Manager, and I couldn't help but smile at our own assertiveness as parents. The Case Worker still seemed to be in awe of the fact that I had secured a Cardiology appointment with Dr. Day for next Monday. She alerted us that she had talked to Dr. Peterson about the appointment and added "I told her, even if we are sending you home on Sunday, you could still make that appointment!" Aha. The hospital's end game. At least, that's my theory. I've placed my bets with Elisa that Sam will come home this Sunday, simply because we now have a critical and hard to get Cardiology appointment on Monday morning. Maybe I'm wrong. But I would think that you'd look at his progress and wonder if the magic day wasn't going to be Friday or Saturday. Instead, it feels like we've strategically placed a bookend on the week. We don't want to lose that appointment and I don't think St. Mark's wants to either.
Another day, another step closer to Sam being home, to us stopping the constant running to the hospital. Another step closer to normal. Now, if you'll excuse me, I have some Friends to watch. Because it's the one where Eddie won't move out (and shockingly, Chandler is my favorite Friend and I remember him to be very funny in this episode). Today, like every other day for the past two weeks, feels abnormal. I'm in desperate need of my 21 minutes of normal. I need to not think. I need to laugh. I need to just be.
Brad
Tuesday, September 24, 2013
Saving Sam (Chapter 1.21): Ladies and gents, we have a plan. What was the plan again?
After we got pregnant with Lukas (but before he was born), I remember a bunch of people warning me that I'd never sleep the same way again. I scoffed. After all, I was a bit arrogant. I could figure things out. It wouldn't be a problem. We'd take turns. We'd get to bed early. We'd do whatever it took to make us healthy, happy, and rested. And then Lukas arrived and I realized that I'd never sleep the same way again. I felt like I was in a fog. But that only lasted for a short while. Because 3 weeks in, Lukas was sleeping a 6-hour block at night.
When we got pregnant with Miles (but before he was born), I remember a bunch of people warning me that I'd never sleep the same way again. I scoffed. After all, we'd had Lukas. And although we lived in a fog for a few weeks, we made it through. We'd divide and conquer. Plus, Lukas was already sleeping in his own bed. We had this. And then Miles arrived and I realized that I'd never sleep the same way again. We didn't count on Lukas going a little cuckoo for cocoa puffs when Miles arrived. Lukas already was the kid that liked to get out of his bed (once he realized he had the freedom). Suddenly, we were trying to get Miles to sleep while Lukas kept wandering around. It got so bad that our Pediatrician told us to lock Lukas in his room at night. It was equally heartbreaking and hilarious to hear him beg and plead the first night we put the safety lock on his door. But we eventually figured it out. We adjusted.
After we got pregnant with Sam (but before he was born), I remember a bunch of people warning me that I'd never sleep the same way again. I scoffed. After all, we had persevered wandering Lukas and colicky Miles. How much worse could it get? And then Sam arrived and I realized that I'd never sleep the same way again. Sure, you have the fact that you never really relax. We live with a constant stomach ache and it is common practice to wake up 2-3 times and wonder if this has all been a nightmare. But more than that, the constant running back and forth to and from the hospital is making us more tired than when we would have been with a little newborn next to our beds.
But when I step back and compare the three, it's hard to know which was the hardest. Until I realize that strange things are starting to happen this time, due to our exhaustion. The other day, Elisa headed upstairs to clean the bathroom. 90 minutes later, I got a panicked text that she had sat down before heading to clean and had fallen asleep. Two nights ago, I pulled myself out of bed, got into the car, and headed down our street. Out of the corner of my eye, I thought I saw Santa Claus pushing a stroller down the street...at 11:00pm. In the dark. When I got to the end of the street, I looked back and couldn't see anything. Yeah, I think I was losing it. And then last night, as I was walking down the stairs to head off to feed Sam, I "might" have slipped on the 5th stair from the bottom. My heels glanced off of each stair as I literally rolled down the stairs in the dark. Elisa got out of bed and asked if I was okay. I told her that I just slipped on the last stair. When I got in the car, I looked at my arms. You could see where the stair railings had ripped up the skin. Hey, at least I had war wounds, right?
Regardless of how tired we are, though, we plug further along. After all, today's 2:00pm feeding was to be the grand unveiling of the plan, right? And my, did they deliver! We were like rockstars! Not only did the Doctor come and see us, but we met Sam's Case Manager and the hospital Social Worker. And we started to understand the plan.
From the Doctor
Sam's progress continues to be strong. Instead of resting on our laurels, the Doctor indicated that she wanted to start weaning him below 40cc of oxygen, with the goal of getting off of it. Apparently, this is a joint goal of all of the Neonatologists - as many kids as possibly leaving NICU without the need for home oxygen. We have 48 hours to wean before we re-evaluate. The expectation is one of two outcomes: 1) He has weaned, or is close, and we make the choice to keep weaning before we leave or 2) He gets stuck in the weaning process (somewhere at or below 40cc) and we go the route of home oxygen. Either way, he'll be weaned and home or sent home with oxygen, with D-Day #3 to come on Thursday.
From the Case Manager
It is important to start planning for life away from the NICU. So the Case Manager helped us with information related to an Infant CPR class (that's tomorrow), as well as trying to secure an appointment with our Pediatrician and a Cardiologist for continuity of care. They had made contact with a Pediatric Cardiologist by the name of Dr. Day at Primary's and instructed us to call and get an appointment within the next 1-2 weeks. She cautioned us that Dr. Day is very difficult to get into, and that we might have to just go with a Cardiologist in the shorter term. Additionally, she walked through home oxygen and the process that we would go through to get and administer that. As she stated, while weaning at home is very doable, the preference is always to have the baby leave weaned from oxygen altogether.
From the Social Worker
Honestly, we got zilch. My understanding of the Social Worker is that we were supposed to get some emotional support...that's how she set things up on the earlier telephone call. I appreciated her initial comment and understanding that this was a very hard thing to go through. As we sat and talked with the Case Manager, the Social Worker just stared on, making one or two comments that didn't really drive the conversation forward. When the Case Manager left, the Social Worker stayed. I fully expected her to ask how we were...and what were we doing to deal with this. I expected some emotional support. First, however, was the problem that all three of today's participants simply talked to us behind nursing screens, while other nurses, doctors, and parents meandered about the NICU. Ummm...couldn't we have talked off of the NICU floor? The Social Worker continued her conversation with us in the same setting. And her emotional support? I kid you not, we got two things: 1) "I'm really glad we have a plan" and 2) "Do you guys feel better now that we have a plan?" I actually know people in the Social Work profession that are wonderful at their craft. For this one, I simply decided that her "work" was trying to be "Social". Because, trust me, the Social of her Social Work seemed like work and seemed like it needed work.
From the parents
You might think that Elisa and I left with the overwhelming feeling like we were in good hands. You'd be wrong. Because one of the key lessons I have learned through this process is that there are plans that are spoken and plans that are enacted. And more often than not, plans stay spoken until the parent forces action. On the way home from the hospital, I called and set Sam up with an appointment for a Cardiologist. I told the scheduler that we were already in consult with Dr. Day (does it count that I heard his name mentioned and turned that into "in consult"?). I stressed that we needed an appointment within 1-2 weeks. We got scheduled for a Monday appointment...with Dr. Day. I immediately called the Case Manager back and instructed her to get all scans, disks, and files over to Dr. Day immediately and that I really had to work my magic to get that Monday appointment, so we really needed to target our efforts to be out of NICU by then.
Then, it was Elisa's turn. My Mom and Dad went to visit Sam around 4:00 (they go every single day as well...so cute) and they informed us that Sam's oxygen was still at 40cc. Ummm...what part of "we want to aggressively wean him over the next 48 hours" includes doing nothing for the first 3? So Elisa headed into the 5:00pm feeding and asked the nurse what was up. The nurse said that the Doctor hadn't included weaning in her orders. Wha? So Elisa just stared at her (in the jungle, the mighty jungle, the lioness sleeps tonight...) and the nurse promptly went over and lowered Sam's oxygen to 30cc.
We found at the 8:00pm feeding that Sam seems to be tolerating the change well. And we have an assertive nurse for the evening, who wants him stable but hopes to adjust him down one more time before the 7AM shift change. Now 7 hours removed from the presentation of the plan, I realize that much of the plan was "we're going to vaguely paint a picture for you to placate you and then we'll see what happens". The problem with that? Elisa and I are motivated parents. And we're simply exhausted. This is a bad combination. We go into overdrive. And we decide that we WILL get Sam home, whatever it takes. As wonderful as everyone has been (and they really have been), I am coming to understand that Sam is and will always be their patient. That's how it should be. But you treat a patient differently than you do a son or daughter. And if you, as a parent, don't start standing up and making things happen, they won't happen at the appropriate pace for your child. And in a blur of feeling helpless (all the time), that realization is wonderful, freeing, and...full of hope.
I say all of this while I stare at my computer screen, more blurry eyed than ever. I'm so tired that I feel like turning the lights off and going to sleep for 3 days. But I won't. I'll get up at 11:00pm. I'll get up at 2:00pm. Elisa will head out just before 5:00am. And we'll rinse and repeat tomorrow. Because that's what we've signed up for as parents. We'll deal with colic. We'll go to great lengths like locking our kid in his room for his (and our own) good. I'll even slip and slide down the stairs in an effort to get my NICU baby his feeding.
I am comforted by one thing, though. I might be tired, but I'm not going insane. It was strange (and strangely wonderful) when I jumped in the car last night at 11:00pm and pulled out of our driveway. As I turned to go up the street, there was Santa Claus, pushing a stroller in the middle of the night. I "might" have turned my brights on just to make sure that this wasn't a recurring dream. It wasn't. He's real. And creepy. And really creepy. But he's real. Thank God I'm not at "hallucinations" level tired quite yet.
Brad
Saving Sam (Chapter 1.20): Conceptualizing 100
Sometimes, when I'm at my highest level of confidence and hope, I think "this hasn't been that long...as long as he is healthy, every single day is worth it." Other times, when the wave is at its lowest point, I wonder what life was like before NICU. It's like it didn't exist, or I was callously blind to the fact that little babies struggle in this area of the hospital. And then, there are the simple facts. It doesn't matter how confident or low you are - some things just are. Today's 11:00am feeding was one of those factual moments. It was our collective 100th visit to the NICU. One hundred. Not 5. Not 10. One hundred times that we either walked from postpartum downstairs. Or that we got in the car and took the 2 miles drive to the hospital. 100 parking jobs when you're bleary eyed from exhaustion. 100 trips (well, double that) up and down the elevator. 100 button pushes to announce that you're there to see your son. 100 sign ins. Providing Sam's special code (required for a visit) 100 times...so many times that I don't think I could ever forget it. 100 frightening moments where your breath catches in your chest as you push the door open. One hundred.
It makes me realize how very little was actually do something 100 times. We are on our 13th day in the NICU, and this is Sam's 14th day of life. 2 weeks. Less time than we typically give an employer when we quit a job. Less time than it takes to go buy a car...well, give or take a couple hours. These are some things that we've done over the last 2 weeks (and likely, you have to) that don't come close to 100.
- Eaten a meal <40 li="" times="">
- Grocery shopping 3 times
- 20 blog posts written
- 80 hours of missed work (so far)
- Lukas has attended 66 hours of school
- Miles has attended 12 hours of preschool
- 36 episodes of Friends watched (about 12 hours worth of shows)
- 4 total football games (2 Utes, 2 Saints) for a total of 12 hours of football
- 7 days/nights of snuggles with the kids
- 39 hours of missed sleep while at the NICU
Just to name a few. Ask yourself this...what, in the last 2 weeks, have you done 100 times? It's amazing to quantify our visits and Sam's journey thus far. We do so few things 100 times, even in a year. We've gone to see Sam, religiously, for 100 visits across 13 days. An average of about 8 a day.
Not that it isn't worth it. Everything we're doing (or helplessly watching) is going to make Sam whole. To bring him home. To wake us up from a nightmare that doesn't seem to want to let up, just yet. However, I'll celebrate, as we near our 101st visit to little Sam's NICU, a couple developments and some hope for next steps or answers.
Today, I got a call from the hospital Social Worker. Amazingly, she has been one of the first people through this to express her sorrow and apologies that we have had to go through this. Not that I need someone to do it...it just struck me that we haven't heard that from people involved (outside of family and friends). Perhaps the NICU staff just realizes that these are their regular days...nothing special to see here...move along. The Social Worker stated that Sam was making progress and that she promised they were making every attempt to get him home "before Kindergarten". Before I move forward with the rest of the conversation, I will say that her joke might have been the worse placed levity in the history of NICUs. Is it ever appropriate to joke about the length of a hospital NICU stay? But I digress. The Social Worker let me know that once they feel Sam is stable enough, she, the Neonatologist, and Sam's Case Manager will work together to get him released. I expressed my frustration that we keep being told what milestones Sam needs to achieve, and then when we achieve them, we go into silence mode.
At the end of the conversation, she brought up Sam's chart to see how he was doing. We gleaned two critical pieces of information from her view. First, it appears that Dr. Peterson is going to start new attempts to wean Sam lower on oxygen. While this is great, it also made me realize that I have been misspeaking regarding Sam's oxygen levels for quite some time (since he moved to the wall). Hey math majors, did you know that there are 1000 CCs in a liter? So Sam isn't on .4 liters per minute. No, he's on 40 CCs. Doesn't that make it .04 liters of oxygen per minute? Yeah, that ain't a lot folks! We are planning on talking to the Doctor at our 2:00pm feeding, and we will hear what her weaning plan is. Apparently, all 5 Neonatologists are aligned with the same vision - to send every NICU baby home off of oxygen. At least we know a bit of their end game.
Second was some good news, mixed with some annoyance. The Social Worker was reviewing his file and said "and of course you know, his PDA has closed." I stopped her in her tracks. What? The hole in his heart has been resolved. It closed on his own. Apparently, the murmur is no more. That's fantastic news...and a welcome relief to his continued progress in his heart. I bit of annoyance, though. Ummm...why am I finding this out as the Social Worker reviews his file? He's in there for a heart condition. Wouldn't it be a "scream from the rooftops!" kind of moment? The Social Workers advice was to see if the Dr. mentions it at 2:00pm. I told her that if no mention was made, I would be sure to do so. If the Dr. doesn't volunteer the information, she and I might have words regarding how parents are kept informed on critical developments in their NICU child.
So as we stand right now, Sam is stable and tolerating 40 CCs of oxygen. He's been doing so for the last 24+ hours and doing it really well. We "think" they are going to try to wean it down a little more. We'll see. Sam's PDA has closed, which means his heart continues to heal. Hopefully that will help his progress as well. And I say all this as we gear up to head for our 101st visit to the NICU. I know that many other devoted parents have probably cleared the 200, 300, or 400 visit mark (especially related to any preemies). But the milestone can't be ignored. And the reality of just how much this has affected our lives is plain as day.
Let's hope that we aren't looking back at 125 visits. Or 150. Or more. Because every day that Sam gets better, I picture a reality where we are doing 100 other things. Like holding him. Letting him sleep on our chests. Feeding him on the bed. Supporting his head as Lukas and Miles hold their baby brother. Buying 100 balloons for Sam's "I'm home" celebration. Sending out 100 thank you cards to all of you. Yeah, right now, I'd rather be doing 100 other things in my life. Yet these 100 (and counting) continue to be the most important things on Earth.
Brad
Monday, September 23, 2013
Saving Sam (Chapter 1.19): Lukas recruits hammering angels
The previous 12 months have not been kind to the Pierce/Kaczka clan. I think it would have been a hard enough year had we not had children, but some of the things that have taken place have been more trying with kids. Not only are you processing as an adult, you're also trying to walk your kids through experiences that they've never really had before. Things started last October, when Elisa sweet grandmother started going downhill. At the end of the month, she passed away and we had to start teaching Lukas about death and what it meant. If you've been reading the blog, you already know that Lukas tends to express his worry and anxiety through...ahem...projectile means. On the day of the funeral, he got sick and we thought he would miss it.
During the mourning process, Elisa tried to help Lukas conceptualize the idea that Great Nana was still watching over him. Every night, Elisa would send Lukas to bed with the statement of "make sure you let the angels work on you!". Lukas converted that to "every night, the Angels hammer me." That creates an interesting image. After Great Nana passed away, Elisa let Lukas know that the Angels now had an extra helper. Great Nana and the Angels would be hammering on Lukas to help him grow, keep him healthy, and watch out for him. In July of this year, my Grandmother went downhill and died as well. Talk about the 1-2 punch in the face. Yet, amidst the grief, Lukas was already showing us that he was about 5 years ahead of himself. He informed us that when the Angels worked on him, they were not only joined by Great Nana, but now Great Grandma. Together, the Angels and his two Great Grandmothers would help him grow, keep him healthy, and watch out for him.
This evening, Elisa, Lukas, Miles and I were snuggling on the bed. I was just getting ready to take Miles to his room when I heard Elisa ask Lukas to "talk to the Angels, Great Nana, and Great Grandma and see if they can't work a little (aka hammer) on Sam. I thought it was really cute, and a good way to help Lukas "do his part". When it was time for Lukas to go to bed, I asked him if he had asked the Angels to work on Sam. He scoffed. He had asked them while he was snuggling with Mom, of course. It seemed preposterous that I was even asking the question. Out of curiosity, I asked him what they said back. Lukas plainly stated "they said they would, but they'd have to divide up the work. So someone's going to work on Lukas. Someone's going to work on Miles. And someone will work on Sam." He crawled into his bed and added "it's too big of a job to do all at once."
I'm hopeful that those Angels keep their hammers out over the next few days. If this afternoon is any indication, I'd say the quiet tinkling of hammers you hear is actually a group of Angels, trying to get Sam home. Because we had a mini breakthrough today. After 3 failed attempts yesterday to wean Sam past 0.6 lpm, we appear to be making some excellent strides. When we went in for our 2:00pm feeding, Sam was at 0.4 lpm and was barely tolerating it. His oxygen was hanging around 89-91. (They want him above 90 at the least). At the 5:00pm feeding, it was slightly improved, but he only tapped out at 94, and was hanging around 90-92. Fast forward to the 8:00pm feeding, and it really feels like Sam is starting to wrap his focus around 0.4 lpm. He was consistently 92-96 in oxygen levels, and while Elisa was feeding him, he even hit 100 4 to 5 times.
This is a big step for a couple of reasons. First, we had kind of stalled for a day and a half. It's nice to start the progression down again. Second, Dr. Peterson indicated this morning that once he got to 0.5 lpm or less, they were now in the range to start observing and potentially think about discharging him. We haven't officially been told, but in my mind, I can see the observation clock perhaps starting tomorrow. And third, it is the most clear example of Sam's willingness to let his body regulate to weaning. We have been told that no more adjustments will happen this evening (that's fine with me...he's earned a night off!), but we now want to start eyeing the possibility of getting down to 0.3, 0.2, or even off of the oxygen altogether.
One of the most prevailing feelings I have struggled with throughout Sam's story is that I feel so helpless. I am a fixer - I need to have my hands dirty in making things better. Tonight, I watched in awe as Elisa used her own feelings of helplessness and asked for love, support, and some hammering Angels from our most tenderhearted supporter. Something tells me that Lukas, Miles, Great Nana, Great Grandma, and Sam are going to make it happen.
Hammer away.
Brad
During the mourning process, Elisa tried to help Lukas conceptualize the idea that Great Nana was still watching over him. Every night, Elisa would send Lukas to bed with the statement of "make sure you let the angels work on you!". Lukas converted that to "every night, the Angels hammer me." That creates an interesting image. After Great Nana passed away, Elisa let Lukas know that the Angels now had an extra helper. Great Nana and the Angels would be hammering on Lukas to help him grow, keep him healthy, and watch out for him. In July of this year, my Grandmother went downhill and died as well. Talk about the 1-2 punch in the face. Yet, amidst the grief, Lukas was already showing us that he was about 5 years ahead of himself. He informed us that when the Angels worked on him, they were not only joined by Great Nana, but now Great Grandma. Together, the Angels and his two Great Grandmothers would help him grow, keep him healthy, and watch out for him.
This evening, Elisa, Lukas, Miles and I were snuggling on the bed. I was just getting ready to take Miles to his room when I heard Elisa ask Lukas to "talk to the Angels, Great Nana, and Great Grandma and see if they can't work a little (aka hammer) on Sam. I thought it was really cute, and a good way to help Lukas "do his part". When it was time for Lukas to go to bed, I asked him if he had asked the Angels to work on Sam. He scoffed. He had asked them while he was snuggling with Mom, of course. It seemed preposterous that I was even asking the question. Out of curiosity, I asked him what they said back. Lukas plainly stated "they said they would, but they'd have to divide up the work. So someone's going to work on Lukas. Someone's going to work on Miles. And someone will work on Sam." He crawled into his bed and added "it's too big of a job to do all at once."
I'm hopeful that those Angels keep their hammers out over the next few days. If this afternoon is any indication, I'd say the quiet tinkling of hammers you hear is actually a group of Angels, trying to get Sam home. Because we had a mini breakthrough today. After 3 failed attempts yesterday to wean Sam past 0.6 lpm, we appear to be making some excellent strides. When we went in for our 2:00pm feeding, Sam was at 0.4 lpm and was barely tolerating it. His oxygen was hanging around 89-91. (They want him above 90 at the least). At the 5:00pm feeding, it was slightly improved, but he only tapped out at 94, and was hanging around 90-92. Fast forward to the 8:00pm feeding, and it really feels like Sam is starting to wrap his focus around 0.4 lpm. He was consistently 92-96 in oxygen levels, and while Elisa was feeding him, he even hit 100 4 to 5 times.
This is a big step for a couple of reasons. First, we had kind of stalled for a day and a half. It's nice to start the progression down again. Second, Dr. Peterson indicated this morning that once he got to 0.5 lpm or less, they were now in the range to start observing and potentially think about discharging him. We haven't officially been told, but in my mind, I can see the observation clock perhaps starting tomorrow. And third, it is the most clear example of Sam's willingness to let his body regulate to weaning. We have been told that no more adjustments will happen this evening (that's fine with me...he's earned a night off!), but we now want to start eyeing the possibility of getting down to 0.3, 0.2, or even off of the oxygen altogether.
One of the most prevailing feelings I have struggled with throughout Sam's story is that I feel so helpless. I am a fixer - I need to have my hands dirty in making things better. Tonight, I watched in awe as Elisa used her own feelings of helplessness and asked for love, support, and some hammering Angels from our most tenderhearted supporter. Something tells me that Lukas, Miles, Great Nana, Great Grandma, and Sam are going to make it happen.
Hammer away.
Brad
Saving Sam (Chapter 1.18): 4 of 5 doctors agree
I don't think the commercials are as prevalent anymore, but it certainly felt (in the 90s and 00s) that chewing gum manufacturers and toothpaste companies all received the same marketing training at about the same time. Do you remember them? Sure, Trident was a delicious gum, but it was probably struggling to keep up with the likes of BubbleYum. And let's face it, why would you go with Trident and their 1/2 inch gum when you could get a wad of Dr. Pepper flavored stuff that could blow bubbles! So Trident changes tactics. They started a series of commercials that showed the medical benefits of the sugarless gum. And before you knew it, 9 of 10 doctors agreed! Trident was the gum to chew!
While most people probably just nodded and went on with their days, I always found myself plagued with questions related to the 1 doctor that didn't agree. Was he an Extra gum fan? Did he just believe that gum was of the devil, and no type was worthy of his vote? Or perhaps, he vehemently had a problem with a gum company trying to exploit his professional opinion about the substance for their own marketing/sales purposes. I know what you're thinking. Something like this is not worth the time or effort of adult thought. Elisa will tell you that I'm not normal, so there's that. But after years of pontificating, I'm pretty sure I have cracked the code regarding the whole 9 of 10 doctors thing. I know what it wasn't 10 of 10. And it's all thanks to our experiences in NICU.
My hypothesis? It's not that the good doctor didn't believe in the gum. It's just that he wasn't there when they took the straw poll. No opinion on the subject means you can't claim that he/she is onboard. After all, look at Sam. He has now been in the NICU for 11 full days, and is well into this 12th. Over that time, we've learned that doctors in the NICU are called Neonatologists. We have found that every Doctor is completely different in many characteristics: 1) ego 2) knowledge 3) beside manner and 4) personality. And, of course, we found that no Neonatologist can hang with my wife (I actually knew this before NICU, but now I just have verifiable proof). We've also learned that the St. Mark's NICU has 5 Neonatologists in rotation. Dr. Lupine, Dr. Swinton, Dr. Smith, Dr. Peterson, and Dr. Liu. A round five. We have now interacted with four of them (Lupine, Swinton, Smith, Peterson). Only Dr. Liu has avoided our radar, and it's only because she hasn't worked yet. Today, we were introduced to (and peppered her with many questions) Dr. Peterson. Altogether different, but telling us similar things to the other Doctors. By the end of this experience, I'll be able to put together personality profiles of them.
It is clear, however, that 4 out of 5 Doctors seem to agree on a few key pieces of Sam's prognosis (I'll share below). I can't say it's 5 out of 5 yet. Dr. Liu hasn't entered the building yet.
How did this happen?
One of the things Elisa and I really want to know. Elisa was the model of health during her pregnancy. She ate right, watched her medications, rested regularly, and kept up on her folic acid and prenatal vitamins. She didn't experience gestational diabetes. And she got regular prenatal care from her doctor. Yet everyone we speaks to...well, the four...say the same thing. It just sometimes happens. Rarely...as in 1 in 700 births kind of rare. But it happens. There is no known cause, and as Sam continues to fight things, it's most likely we'll never know the cause.
What is Sam battling?
Okay, maybe 4 our of 5 doctors agree on this, but Dr. Peterson was the first to explain it in a way that both helped, and made the lack of answer to Question #1 more difficult. Peterson explained that typical infant pulmonary hypertension is brought on by a disease/infection/problem in the lungs. They don't function appropriately, which puts strain on the heart and develops the hypertension. In those cases, once the lung issue is resolved, the hypertension quickly resolves itself and the baby is on their way to recovery. Sam's lungs have proven to be good, clear, and non-problematic. Simply, he developed pulmonary hypertension, which has put a strain on his lungs to breathe without difficulty. What does this mean? That you can throw the regular handbook out the window. Sam's atypical.
So how is he doing?
Outside of the horrific initial beside manner of Dr. Smith, all of the doctors are aligned with the view that Sam continues to steadily improve. They are satisfied with the results of the echocardiograms (well, so far as getting him out of the NICU...more on that below) and the subsiding pulmonary hypertension. He is now learning to breathe on his own with less and less supplied oxygen. For the past 1.5 days, Sam has been sitting a 0.6 lpm of oxygen. According to Dr. Peterson, we really need him to be down to 0.5 lpm or less before the 48 hour observation can begin. Never before has 0.1 seemed like such a big number.
What's next?
Periodically, the respiratory therapist will review Sam's oxygenation and breathing and determine if his current levels dictate a test of dropping the oxygen level. They will then lower it and watch his oxygenation. Since yesterday, we're aware of three tests and three failures at weaning any lower. Apparently, Sam's oxygenation drops into the 80s. Provided that he does eventually drop at or below 0.5 lpm, we observe him for stability for 48 hours and then can look to getting him discharged. Through the 48 hour period, they will continue to try to get his oxygen down. If they get it around .25 or .2, we may have a conversation about him staying to kick the oxygen completely, but that's to be decided. If he levels above that, we will take our baby home with oxygen and a machine that tests his saturations. Suddenly, I think if that happens, we might never sleep. We'll just hear alarms and worry. All the time.
What about Sam's heart?
Outside of the potential for oxygen, 4 out of 5 doctors seem to agree that we need to follow-up with a cardiologist. The specialist will help us to monitor Sam's pulmonary hypertension to ensure it is fully eradicated, as well as help us with the oxygen weaning process as well. I did inquire about Sam's murmur, as it had been mentioned multiple times without great description. He does have one, and Dr. Peterson indicated that the echo observed a small pda (no, his heart isn't showing a public display of affection...Google tells me that it stands for "Patent Ductus Arteriosus"), which is a natural hole in between the aorta and pulmonary artery. In most cases, the hole closes in the moments or days after birth. Sam's appears to be open (or was as of the last echo). It is very small opening and they aren't overly worried about it. It should eventually close off and resolve itself. Most importantly, Dr. Peterson assured us that the echos have shown "no anatomical problems or structural defects".
Anything else?
The last two days, two nurses have commented on Sam having bouts of rapid breathing (tachypnea). Every time it was mentioned, Elisa and I panicked...was this a sign of further problem? Something undiagnosed? According to the Dr. today, it is to be expected. Sam's bouts of rapid breathing (and slight retractions) will probably hang around after he's home. It will slowly resolve itself, and one day, you'll find it is just gone.
Dr. Peterson, who was equal parts very knowledgeable/helpful and very good giving me a look like "why are you asking me?" with each additional question, let us know that she has a relative back in Michigan that experienced the exact same thing that Sam has. In her case, they didn't know what caused it. She followed a similar path. She went home with bouts of rapid breathing. And now, she's three years old and as healthy as can be. As Dr. Peterson described her, she's a pistol and the hypertension fully resolved itself.
So I guess the whole 4 out of 5 doctors agreeing means...
That I've finally cracked the code behind Trident's marketing campaigns! No, not really. It simply means that we are slowly making progress. We're starting to chart what life after the NICU will be (and there will be more to the story, it appears). We're 0.1 lpm away from actually starting a potential observatory period that could allow Sam to go home.
For now, I'll take that 4 of 5 doctors agree on Sam and his continued (albeit slow) progress. I just personally hope that we are home before Dr. Liu can make the equation "5 out of 5 doctors agree!" With all due respect, of course, to Dr. Liu.
Brad
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