Sunday, January 2, 2011

If Money Can Fix Your Problem, You Don't Have a Problem

The title is one of my mom's favorite sayings.  I never thought much about it, because to be honest, we've never had many problems in my family that money couldn't fix.  Until now. 

My niece was born on December 20, and all seemed well, so she went home like any normal baby.  She is cute as a button, and we were all so happy.  On the 29th, my sister took her to the doctor for a check up, where he detected a heart murmur.  Within hours my sister found herself at Mott's Children's Hospital at the University of Michigan, and was told that the baby needed open heart surgery because her aorta was too narrow, and she was suffering from congestive heart failure.  (The baby was eating fine, and there really weren't any outside signs that she was this desperately ill.)  To add to that, the baby has a hole in her heart and tachycardia, but the big issue was the aorta, and the lack of oxygen getting to her extremities.  The doctors advised my sister at that time that they intended to do the surgery either Friday the 31st or early the following week; they had to get the baby stabilized before they could do the surgery.  In the meantime, the baby was hooked up to oxygen, tubes, medication, a venilator, and all kinds of medical equipment.  This was bad, but all around we decided to stay optimistic, since she was at one of the top pediatric hospitals in the country, and surrounded by expert cardiac doctors.  We had to assume they knew what they were doing.

Things took a turn for the worse on Friday when the doctors discovered that she had a perforated bowel.  This led to surgery on New Year's Eve, resulting in the removal of her large intestine and a small part of her small intestine.  This led to a really bad infection throughout Saturday, and loads of antibiotics.  Luckily by today the infection had improved a lot, although she is nowhere near being out of the woods, as she is having some internal bleeding and may have had a seizure yesterday.   

All of this also means that she won't be able to have the heart surgery she desperately needs for a few weeks, until she has stabilized from the bowel surgery she just had, and recovered from the next bowel surgery she needs, which the doctor hopes to do in the next few days.  She is on 8 different kinds of medication to aid in her recovery from the surgery, as well as to keep her heart doing what it should be doing for the short term.  The good news for now is that it seems to be working, and her extremities are no longer purple due to lack of blood circulation.  The bad news is that her kidneys appear to be having some difficulties, but it may only be because the machine is doing a lot of the work for them.  The last thing we need is for more of her organs to decide to quit.  On the bright side, she has her own room and her own nurse dedicated to taking care of her.  That's how serious her problems are right now.

Things could go either way for her.  My sister and her husband are holding it together, but I don't know how.  My mom has lost her mind.  You don't expect something like this to happen when a new baby is born.  We've never had anything like this happen in our family.  I read on the Internet that heart defects are fairly common, but the baby's are very bad.  If the baby survives, she is going to be in the hospital for a long time, and even then we don't know what other kinds of complications this is going to bring to her life, including developmentally and mentally.  (Although surprisingly you can live a pretty normal life without a large intestine, which is something I never realized.  Apparently the small intestine is the one you really need, and she still has double the amount she needs there, so there's a bright spot.) 

My heart is just breaking for her.  She's so tiny and sweet, and to have all of these problems right out of the gate is just devastating.  Every time my phone rings my stomach drops, as I expect it to be my mom or my sister telling me she passed away.  The doctors have told my sister that if she makes it through the next week her chances are very good to make it through everything.  So, only time will tell.  I haven't been able to go see her yet because I've had a terrible cold for the past week, and my sister told me the hospital wouldn't let me anywhere near the baby with this cold.  So, I will probably head over there sometime this week or next weekend.             

She will be two weeks old tomorrow.

The point of this post is really to say this:  be thankful every day for your health, and if you have a baby or a child who is healthy give them a huge, huge hug and thank your lucky stars that they didn't have to go through all of this.  Never take your health for granted.  And don't sweat the small problems, those that can be fixed with money.  Health can't be fixed with money.  We could pour all the money in the world into this hospital and it isn't going to make a bit of difference for the baby's outcome.  She's either going to be able to make it, or she isn't, and there is absolutely nothing any of us can do about it.  It's really frustrating to feel so powerless.          

And oh yeah, Happy New Year.  It's starting out pretty great for my family... 

2 comments:

  1. Holy freakin crap. I am so so sorry. Just today I was wondering where your blog posts had gone and how your holidays were. She's in the best of hands and there's nothing anyone else can do right now. I'm not big on prayer but this is one of those times where it doesn't hurt. My positive thoughts are being sent to your family right now.

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  2. Aahh, breaks the heart to hear of children suffering.

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