Posted by: seserdr1975 | September 30, 2013

In the Beginning

Afternoon all! So one of the downsides to having a chaotic first month, is that I don’t remember a thing!! Thankfully Sue, the nurse who stood by me and my family, shared her recollections with me today. And I want to share with you all:

“You were transferred to LGH when I was off celebrating my birthday.  I was assigned to you when I came back to work a day or 2 later.  You were considered a “big preemie” because you were a 32-34 week baby but weighed 5 pounds—which was about a pound bigger than our babies usually went home weighing.  You had an appropriate degree of respiratory distress for your gestational age and had to be intubated and placed on a vent.  Like most babies, you hated every aspect of that—especially the having your hands covered and restrained so you didn’t extubate yourself part.  And you had quite a temper….  You would scream (silently of course because of the ET tube) but that act of holding your breath caused pressure to build against the vent when it would try to ventilate you.  You eventually had 4 chest tubes (which may have been a unit record).  Back then we didn’t use propafol or other paralytics, so you were quite the challenge.  It took a while to get you off the vent and then you started having preemie seizures.  This is pretty common, and you responded well to phenabard for control.  There were also the usual episodes of apnea—preemies sometimes forget to breathe.  You were one sick baby for a while.
Once we finally got you off the vent, you still needed chest pt and breathing treatments.  Those big beautiful eyes would look up at me while I was pounding on your back…I just kept thinking this little boy is going to come back and get me in a dark alley someday….
Then came the weaning you from oxygen to room air (21% oxygen).  This took forever because you had developed bronchopulmonary dysplasia—this comes from being on the vent, cpap and in oxygen for such a long time.  Weaning usually took days, in your case it was more like weeks…you had had had to have 22% oxygen for what seemed like an eternity or you would turn purple within minutes….
And then there was you ritual circumcision.  I was your nurse, therefore I was responsible for you.  Now, this was the first ritual circ the little Catholic girl had ever been a part of, so I knew nothing.  Dr. Mangurten, however, had some knowledge for sure!  The Rabbi told me to keep soaking a 4 x 4 in wine and letting you suck on it to keep you calm.  Well, let me tell you, if we thought you were angry about the hand restraints…we knew nothing of your temper when it came time for that circ.  I just kept giving you the 4 x 4 and you finally calmed down—for about 12 hours.  So, I may not have been with you when you turned 21, but I still hold the distinction of being the first person to get you drunk.  No one thought (and what did I know) to hold your phenobarb.  We had worked so hard to get you to drink from a bottle….yupper do…back to tube feedings for a day or so……
During this whole time you were at LGH I was your nurse on whatever shift I was working.  I talked to your mom and dad frequently and we built (as you know) as life long friendship/family.  When you finally went home I was both thrilled that you survived and from all exams you also were at totally normal levels for development, but cried because you were my baby, too.  Todd, there is no reason on this earth that you survived without being a vegomatic.  Yes, you were that sick and had that many problems.  A few weeks after you went home your mom and dad invited me to dinner at your house.  You were rolling around the floor being a normal baby, which had me in tears.  Except…you were kind of not really using you one arm and leg in coordination with the other one.  Your mom asked me if I noticed it and what it could be.  You have to realize that that was a very difficult position for me.  First of all, socializing was against every rule in the book.  Secondly, as a nurse I knew something wasn’t right, but as a nurse we aren’t allowed to diagnose.  I asked her what the pediatrician had to say, and your mom said he told her to stop being such a preemie mom and stop worrying.  I might…have suggested…. a second opinion…..which thankfully she got so that your diagnosis and treatment could begin when you were very young.
Todd, we have no crystal balls.  We take an oath to do no harm.  You defied all the odds, and while you are now, and have lived with a lot of pain and frustration, you are better than I ever thought you could be.  You are a warm, kind and loving person, not to mention so damned intelligent!  I am so proud of you and all you have accomplished.  You were blessed with an amazing family who has and will continue to walk through fire for you.  And you have the right wife/life partner—I haven’t met her (when might that happen????) but I see in your smile and those beautiful eyes how happy she makes you. ” ~Sue
Thanks so much for sharing that Sue. If there is one lesson to be learned is that a lot of people fought very hard to keep all of us alive. We owe it to them to make the most of all the gifts that God gave us.

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