Wednesday, February 8, 2012

NOT having a Pity Party TODAY!

A little perspective goes a long way.  Urban Dictionary’s best definition of “pity party” is a way of experiencing grief, in which you spend your time feeling sorry for yourself and whining endlessly about how crappy your life is. The definition goes on (comically) from there, but that’s the main idea.  And I’ve been throwing myself a pity party in regards to Finn’s “condition” for the last week or so.  I’m still going to list the things that make me want to throw this party just to document them, but dwelling on them doesn’t change anything.  My perspective – which was very self-centered – was changed while thinking about the tests we all face.  What does it mean to test something? It means to put pressure on it to see if it will do what it says it will do. Will it hold up under stress?  I have, I am, and I will continue to do so.  We all do.  By putting my tests in perspective, I realize this isn’t that hard, just a minor inconvenience – with an end in sight. Joyce Meyer says (on being tested by God) The key is to keep trusting God, even if you don't understand. There is no such thing as trusting God without unanswered questions, but when you push ahead, despite your doubts, He will build you up and make you strong.

First, the update on Finn after he had his 4 month appointment with the pediatrician yesterday.  He weighed in at 9 pounds 6 ounces (!!!) and just over 20 inches long.  He is growing like crazy – which is GREAT!  Unfortunately, his 2 hernias are growing, too, so surgery is definitely in his (distant) future.  He got immunizations consisting of 3 injections and one he drank.  He has perfected the “hold your breath and turn so red you’re almost purple” post-injection cry.  I know it is a bit cruel, but it really makes me laugh.  He looks so pitiful! But, he also recovers quickly.  The doctor says he is doing GREAT and is perfect!  She weaned his oxygen to ½ a liter 24 hours a day and kept the heart/apnea monitor at 24 hours a day as well. While we are super pleased to finally be weaning the oxygen, we are equally bummed to still be tethered to the monitor.  But, she did indicate that she plans on him being done with all of it by his 6th month day (in 2 months)!  We go back in 3 weeks to wean the oxygen again.  

And now for my pity party. I am utterly, completely, wholly, downright FRUSTRATED with the stupid monitor.  IT NEVER GOES OFF – in relation to the baby.  It goes off when the battery runs low (we forgot to plug it back in after moving the baby, or it falls out of the loose plugs in this house).  It goes off for “loose leads” (the leads on the baby are under his arms and held in place by a soft belt and Velcro – definitely not newborn wiggle proof).  It goes off indicating low heart rate or apnea while he is eating – which is just WRONG and I chalk it up to the imperfections of the leads.  And it goes off when I step on the cords which are always in the way and it causes the electrode wires to pull out of the data cord.  Every single time it goes off, it is LOUD, it is piercing, it causes anxiety in the people of this house, and the baby is fine.  SO ANNOYING. 

But beyond the maddening alarm going off, the sheer logistics of caring for this baby on tethers is exasperating.  The oxygen tubing and the monitor cords literally act as leashes for my baby.  I can’t move freely from one room to the other without extensive preparation and equipment toting.  It hurts my heart to not be able to just pick him up and take him with me.  I can’t even reach my front door with him in my arms due to the restrictive monitor cords.  The monitor has about 5 feet of power cord, then about 6 feet of “patient cord” from the machine to the baby – that’s basically 10-11 feet of slack.  There is a battery on the box, so the power cord can be unplugged for short periods of time (until it alarms for being low on battery!), but you have to be near the box in to do that.  During the day, the large (heavy) oxygen concentrator is out in our living room – plugged in to a power strip that originates behind the couch.  The power cord on this machine is about 9 feet, then there is about 25 feet of tubing that runs from the machine to the baby.  So, there is approximately 30 feet of range on the oxygen for the baby and I.  That’s not much.  Luckily, I live in a small house.  If I detach the power cord from the monitor, I can take Finn and his oxygen to the kitchen, and down the hall - including the small bathroom and the girls' room to just inside the door to Jake’s room.  But, to take him to his crib (my room) at night – or for a nap or bath, it involves several steps: Hook him up to a portable tank of oxygen; turn off the concentrator; unplug and move the concentrator to the bedroom; plug in the concentrator; go back and transport the baby, the monitor and the tank; turn on and hook the baby back to the concentrator; turn off and store the tank.  And that doesn’t even include the gymnastics of the monitor!  Each move involves unplugging it from the power source, putting the monitor bag over your shoulder to carry while bringing the power cord with you, then plugging it all back in at your destination.  This process is neither easy, quick, nor FUN in any way.  There is tubing and wiring strung all across the room we are in, and when there are other children home, you hear a constant chorus of “Watch out for the cords! Don’t step on the tubing!  The tube is caught – can you get it for me?”  And so forth…  And when you inadvertently step on the monitor cord while walking and carrying the baby, it jerks the leads out of their ports on the patient cable, therefore causing the alarm to scream.  And me to curse.  Plus, we have all gotten our feet tangled in the various cording - causing us to stumble, jerking the baby, and/or causing Finn stress by pulling too hard on either cord so that it affects him.  And, bathing or dressing him?  FORGET ABOUT IT! To bathe him I hook him to the portable oxygen tank and cart it to the bathroom with us.  Luckily, I can remove the monitor belt and leads, but he is still on oxygen – so the tube gets a bath, too.  Then, to dress him, anything that goes over his head (most baby clothes do – especially his undershirts) has to have the oxygen tubing thread through it before it goes on the baby, and the monitor lead cords have to be threaded OUT of the clothing when you finish up.  Plus, everything that goes over his head tends to pull the oxygen tubing and/or the adhesive that holds the tubing to his face out of place.  Add to that he is a wriggly newborn, and dressing him quickly becomes a strenuous wrestling workout.  Thankfully, we are mostly homebound, so beyond keeping him warm and comfortable, clothing doesn’t really matter.  And on that note – you can IMAGINE based on what I have said so far what putting him in a car seat and going out in the car is like.  WHEW! I desperately want to be able to pick my baby up and carry him, dress him, bathe him, cuddle him, feed him and care for him without all the DRAMA!

But none of that matters.  He is recovering.  He is home.  He is OURS for a lifetime.  He is doing all the things he is supposed to be doing – and so am I.  The doctor said 2 more months and we should be done with the monitor and the oxygen.  After as far as we have come, I can totally do that.  I know I will have challenging moments and exhausting days.  But, I will have joy.  And I will have peace.  And I will have understanding – knowing that this is all part of God’s plan.  He is testing me.  Teaching me patience and endurance and COURAGE!  And He is more than enough.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Philippians 4:6-8

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