Tuesday, March 18, 2014

Taking a Break From Breathing

Dear Ellie,

The infection in your lungs appears to have cleared up, so you seem to be wiggling in the right direction.  We've been discussing with the doctors what to do next, and it looks like we might give you one more chance to fly without the steroids.  I'm convinced that you didn't have a fair shake, last time.  But it depends on your behavior these next few days.  If your respirator needs go up, we'll probably have to juice you up with "performance enhancing drugs."  If they go down, then we'll kick you out of the nest and see how far you make it before you smack into a tree or get snatched up by a hawk.  Nature is cruel sometimes, dearest.  Survival of the fittest.

I feel a lot more confident than the doctors that you can do well off of the endo-tracheal tube.  On the tube, you tend to slack off; fail to live up to your true respiratory potential.  When your blood oxygen level is low, you breath like crazy until you get to 100 percent.  Because the ventilator is taking extra breaths FOR you, something in your baby brain tells suggests that you should take a breather from... uh... breathing.  At that point, you let the ventilator do all of the work for you and the oxygen in your blood promptly declines.  At this point, the cycle continues and you start breathing again like crazy until you are back at 100.  This seemed to bewilder the respiratory technicians, at first.  All of them were utterly convinced that you had a heart condition and that all of your blood was being shunted to one side of your body, then the other.  Apparently, a heart defect and laziness look very similar.

On the CPAP, you didn't get any "freebie breaths."  You had to take them all on your own, so at no point could you just take a break and let the ventilator do all the work for you.  As a consequence, your blood oxygen levels remained more consistent.  There was no room for laziness.  I've taken note of this detail for parenthood, later.  You'll be doing your own science fair projects.  I'm afraid that if I help you, I'll end up doing them all for you.    


  1. Shane and I have been thinking about you all quite a bit lately. I check the blog probably ten times a day to make sure I didn't miss a post. We didn't get much sleep Sunday night wondering what the repercussions would be. I know I wasn't there and I haven't been there through this whole process, but I've had a feeling from the start that Ellie might be a little stronger than we think. I told you about the dream I had right after she was born, right? I came home to visit her in the NICU and while I was holding her she morphed into a little kitten and was playing around in her incubator. At first I was really uncomfortable as she was playfully getting caught up in her wires, but then thought, "hmmm maybe she'll do a lot better than I anticipated." Anyway, I thought of the cat with nine lives.
    I can only imagine how unstable everything still remains with her progress but I think her last attempt of freedom from the ventilator was pretty encouraging. Also how she got through her accident this weekend is a good indicator too of how strong she is. I'm not trying to sugar coat anything, or say have hope in miracles, etc, but I am encouraged by her resiliency this past week and amazed at how fast her recovery was that first 24 hour period afterward. She is one strong little lady.
    Shane and I were wondering if there is a different staff on the weekends? It seems too much of a coincidence that every weekend there is a set back, especially what happened this past weekend. We were just curious.
    I'm glad you are there to be with her every moment, because you know her behavior the best. Ellie's breathing "laziness" makes sense, were you the one that observed that? Seems like a detail which would be overlooked by a technician that only visits in sporadic intervals. You would be more likely to notice since you are there on a continual basis.
    You and Rani are spectacular parents. We love you all and are thinking about you. Talk to you soon.

  2. Yeah, I don't think anyone in the family got much sleep that night. As for the staff, the staff is rotated in a rather random fashion from week to week. We had a great nurse the night that everything went wrong, but an RT that was... prone to mistakes. Since it was a respiratory issue, the RT was "the decider." I didn't mention it in the letter, but before everything went wrong, the RT improperly put the CPAP back on Ellie's face, so she wasn't able to recover very well from an earlier problem. I had to point it out to him before he noticed. And then when her nose began to bleed, I had to point to the blood pooling around her nose, too. When Ellie was suffocating, our nurse Julie wanted to "bag Ellie" to give her more oxygen so that she wouldn't be hypoxic for too long which is exactly what we wanted to do, but the RT just kept trying (and failing) to reintubate her which is why she was blue for so long.

    Anyway, what you say is true to some extent. We're the only ones that are here every single day. We're almost 2 months into the ordeal and STILL we walk in and meet nurses that we've never encountered before working on Ellie. It's a little bit scary, to be honest.

  3. That is why preemie parents will tell you that YOU are the advocate for your child! YOU are the only constant.... even if you have primary nurses... they are only on if it is their shift and they take days off and vacations etc and you end up with new nurses. I was also irritated if i noticed something being done incorrectly in the NICU. As a parent you shouldn't have to know all of this medical stuff and to know that the actual medical experts are making mistakes that have to do with your child that is in critical condition is irritating if it is something small and infuriating if it is something like what happened to Ellie. The NICU is like medical immersion school... once you get to the other side you will be asked if you work in a medical profession you learn so much. I hope things continue to progress well and you can get in a few more BM stories soon!

    1. Yes! So true! I was skeptical at first when I showed up that I would be of any use in here, but I'm finding that the longer I'm here, the more often I pick up on things. Yes, the medical staff is trained, but they aren't here all of the time. They don't know all of Ellie's nuances because they only really keep track of the really big things. Rani and I are going to start keeping a journal to keep track of the little things better.

  4. Hello to the Smith family!! I'm happy to read that Ellie has recovered from her episode the other night, and I hope only the best for her until she goes home with her loving parents! You two are great, attentive to details, as all parents should be. I was debating with myself as to whether or not I should even comment on this blog, but reading the comments, I found that there were a few inaccuracies that I couldn't help but notice. For example, number of intubation attempts, ventilation support issues, and couple of other things that I wouldn't mind discussing with you in private. I care for Ellie as much as any one person in the NICU. Sometimes in the medical field things are not as black and white as some would like to think. I'm a father of two, my youngest being only 16 months old, and I've been on the on the other side as well. Maybe not to your childs extreme, but as a parent trying to lookout for his child. I"ve shed tears as well in the presence of bad news presented to me. I've been there!

    I make this point because of the comment " mistake -prone RT", which I didn't really appreciate much!! And we could talk about these so-called mistakes in private if you'd like and I'd more than happy to address your concerns. But when such episodes happen, you must try to isolate the problem so as to not make a mistake, one that can be consequential. I was already aware of some issues that we can discuss in private. but what had happened was atypical. If this were black and white and you seem to know the answer, perhaps you should have said something and voila, problem fixed!! but obviously that wasn't the case. I may not have been as loving as a brand new nurse, but trust me!! I cared as much !! I'm refraining from a lot that can't be said here in an open forum, but would love to here from you.

    I only wish the best for Ellie, and progress!! After all she has much to look forward to, including two loving parents!!

    Best regards,
    "The RT"
    Karim Gebahi

  5. Karim, thank you for participating in the discussion. There is no reason why you shouldn't comment. My wife and I, while in the NICU, are always constantly grappling with whether to speak up about things that we notice or to be silent. My presumption is that the things we are concerned about are most of the time already taken note of or are not even problems at all. Our biggest worry, from the very beginning, was just whether or not we are being a distraction. So we tend to try to avoid being too analytical about the "little stuff". Sunday night, well, that was one of those things that's hard not to scrutinize carefully (maybe excessively).

    As the crisis continued, we began to perceive that the only child we would ever have was going to die from an inability to access her airway. That tends to sharpen certain details and muffle others. I think the only thing that terrifies us more than anything is the fact that every staff here in the NICU is as human as I am, and capable of making human mistakes. You probably noticed at some point the picture of the eel inside of Ellie's isolette. He was a beloved, friendly pet that we had for any years, and a simple mistake that I made contributed to his death. I was cavelier about a problem in his 2000 gallon aquarium and, with all of my experience in marine biology, I came to a conclusion over a potentially severe issue without consulting with a second or third expert soon enough to make a difference. As it turns out, Oliver the Eel was facing a very complicated problem in his tank beyond just my own actions, but having made this kind of mistake before myself, I can't help but to wonder whether similar oversights occur elsewhere. Yes, and it is indeed absurd to compare an pea brained eel with a baby, but to er is to be human. I will gladly cede that my perception was compromised on Sunday and that my view of things would be flawed. Seeing your child blue, squirming on a bed helplessly tends to darken the periphery of your perception. Maybe her care was flawless, and may well have been given that I'm not trained in this field. However, I would just want to know that if ever mistakes were made, hubris wouldn't get in the way of making sure that they didn't happen again.

    It was good to have this opportunity, and if you would like, I can politely delete any comments that you are uncomfortable with.

    1. Hello Dana! Thank you for your response. I can understand your position, and I wish that nothing ever happens to Ellie. I can't even fathom having the most precious and dearest person in my life being taken from me! And yes anyone can make a mistake, and I tried to keep that at a minimum, if at all, from happening. I just felt that I was portrait in an unjustified way! But I can also understand that both of you were going through an array of emotions and fear that you might possibly lose Ellie. No parent should ever have to go through that, but unfortunately life is cruel and will throw a wrench in the course of progress, as you witnessed first hand. We may not agree 100% on the course of events (or action), but I can assure you that I took the proper steps in Ellie's care and safety minus couple of inconveniences which were minor and not instrumental in her failure to thrive!

      This is an open forum for discussion about Ellie and her care, and you don't have to delete anything. You have a right to voice your opinion, and I'm merely voicing mine just clarify a few things that I found to be unjust. In retrospect I understand your feelings and wished none of this ever happened. Unfortunately, it is what it is!

      I wish nothing more than the best to the three of you!!

      Best regards,

    2. Thank you, Karim, and I agree that the comments about continual intubation were written with a foggy recollection of events. My wife and I were, after all, a good distance away and not clear minded at that moment. I honestly didn't blame you for the nose bleed or the mechanical "complications." I understand that sometimes, things are primed to go wrong with preemies and ESPECIALLY digital technology and hardware regardless of who happened to "touch them last." Those were the primary agents of the problem and they had nothing to with your efforts.

      Just consider, though, as a parent who doesn't know you personally, the only thing I had to go on was what I encountered. Minor oversights, in the absence of other data points can draw a concerning trend to an onlooker. The misplaced CPAP, the overlooked blood, and a reluctance to call for "reinforcements" well into the hour of Ellie's ordeal made me nervous (more minds for a dangerous, protracted problem can only help). By the time we got to the point where Ellie was starting to suffocate, it was hard not to follow that trend line to other conclusions, so I think you can understand how I might have come to them. There have been times in my life where I have made a series of small mistakes that may appear to someone I don't know as far more damning or embarrassing than they should be, so I can understand being on the other side, too. But just know that even with my opinions, I wasn't certain enough or angry enough to make a fuss with other staff. I'm not a trained RT, nurse, or doctor so I can't draw any kind of definitive conclusions about most of their duties, so I wasn't going to go there. Still, as a father yourself, I would expect you to observe the care of your children with similar scrutiny even in fields that are not specifically your expertise. No one is going to pay closer attention than you. If a stream of conspicuous but minor issues were slipping through the cracks with a pediatrician or radiologist, its something I imagine you would pay attention to also.

      Overall, I've gotten friendly with most of the staff, but I'm finding myself frustrated most of all simply with the constant rotation. Two months into this journey, I'm still coming in during the morning or evenings and encountering staff that I've never met before taking care of my girl. Because of this, its difficult to build trust. I'm sure there's some reasoning behind it, but I'm constantly told that "every preemie is different" and that "every preemie has its own needs." If that is the case, I wonder how a preemie's subtle nuances, which can matter greatly, could possibly be recognized. I know, that's not your problem, but again, a lack of familiarity can breed uncertainty and fear.

      Anyway, thank you for expressing your concern. I'm ready to put my suspicions behind me.

    3. Following the "NICU news" on this blog has really given me a better idea of what the Smith family is going through as well as how unpredictable NICU medicine can be, seeing how progressive this field has become. I never found myself questioning the ability, concern, and care of the medical staff throughout this blog but for a moment last Sunday night when all of this was happening, I remember feeling upset about the whole situation, especially toward the medical staff. But also at this moment I realized I was completely unjustified in feeling this way and as Karim stated, I was going through an "array of emotions" from something I didn't completely understand at the time. Also most importantly, I realized at this moment that without all the help of the medical staff and technology in the first place, none of this would even be possible. I am only speaking for myself. Anyway, thank you NICU medical staff from Auntie Andy!