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Liam’s Story April 10, 2010

Posted by hollyspinner in Life.
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I have wanted to write out Liam’s story for a long time, but when one in right in the middle of emotional turmoil it is really hard to write anything that doesn’t sound like a bad melodrama.  I think I am enough removed from the high drama to write it down now with some circumspection, but read on and you can tell me if I did it right.

The last year has been one wild and crazy ride.  It is hard to believe it has been only a year, yet it seems like just yesterday the little guy was born.

Dan's Cell Pics 082In the beginning – I was huge!

Dan's Cell Pics 030But Liam was a nice normal 7lbs 14oz – if a little early – five weeks early to be exact.

Dan's Cell Pics 092Then came his stay (30 days) in the NICU.  His long stay was prompted by the fact he wasn’t a good eater.  It takes a special baby to look cute with a nasal canula – but I think he pulls it off.  He was finally sent home with the feeding tube.  I had to learn how to replace it and had to do it twice before he *finally* warmed to the bottle.

We had a lovely three months at home doing all the great stuff one gets to do with little babies: changing, feeding, burping, sleeping.  Liam was, and still is one of the most laid back people I have ever met in my life.  He takes everything in stride, happy just to be where he is at in the moment.  The only time he cries is when he needs something.

I did not have an easy pregnancy, and as a result I had a gazillion ultra sounds – no really, I have more pictures of Liam before he was born than I have of the daughter for her whole first year.  At my routine 30 week office visit the doctor says to me, “Well, lets do one more ultrasound just to be sure everything is still going ok.”  The next week I am in for my usual appointment the doctor says “Holly, there is a something in your baby’s head.  I don’t know what it is so I am sending you to the specialist.”  In case you were wondering – yes I did think every possible bad thing that could be thought at that moment.  I saw the specialist and he said “Yep there is definitely a something in your baby’s head, I don’t really know what it is, but the baby will be born and will thrive. We will take a better look with an MRI after he is born – it is really hard to tell a fetus to not move while you are taking the MRI.”

After one failed attempt at an MRI right after Liam got out of the NICU – the anesthesiologist really did not want to put him under.

Dan's Cell Pics 108Four months old – getting the MRI.   Liam has really tiny veins – that like to hide, this makes drawing blood or putting in IVs really challenging .  This photo is when we were taking a break in trying to get the IV in saga.  (It is hard to tell little babies not to move while taking the MRI so they have to sedate them.)

The results of the MRI were this: Liam had a crainopharyngioma – this is a benign tumor in his pituitary gland.  (Interestingly they don’t usually find this kind of tumor until children are much older, because it is slow growing there are no symptoms until it grows into something of importance – either the optic nerves or the brain.)  They admitted him and the next Tuesday he had surgery.

Dan's Cell Pics 111

This  is the least graphic post-surgery photo I have. The Klingon-like ridge in his forehead is a drainage tube, it was removed a few days after this photo.  The incision goes across the top of his head about an inch behind his hairline – they did not have to shave his head as he really didn’t have that much hair to speak of.  I didn’t count the stitches, there were two layers, plus his skull under his forehead was sutured back in place.  Overall I want to say there was maybe 40 altogether.   There is also a drainage tube and a monitor from inside his brain.  In this photo he is on pain medication – surgery hurts.

Dan's Cell Pics 120Did I mention that Liam is one of the happiest people I have ever met in my life?  This was about 4 days after the surgery.  He recovered just fine.  He has to take hormones morning, noon and night, but one of the hormones, DDAVP, he does not have to take because a part of the brain took over that function. (I was super excited about this as it was an injection, and I would be the one doing the poking.)

The only lingering result of the surgery is the fact that Liam is little.  When he was born he was the biggest baby in the NICU.  But after the surgery his growth, well, it fell off the curve.  Babies 3 months his junior look like they could squash him.  He is wearing 6-9 month clothing.  This is due to the fact that he does not have a pituitary gland so he cannot produce the human growth hormone.  Medicine really does not know how much growth hormone actually plays in the the first growth, but the doctors did tell us that Liam would have to start taking it after his first birthday.

So life goes on, right.

094Christmas

Dan's Cell Pics 158Liam had a little cold this winter.

Dan's Cell Pics 169Solid Food – and teeth

SDC10294Easter – Liam’s second as he was born on Good Friday.  Time is sometimes weird.

SDC10328And Today

Happy Birthday Liam!!

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Comments»

1. Holly - April 19, 2010

And a happy birthday to him!

2. Jenifer O. - May 13, 2010

Holly,

I knew that Liam had a difficult beginning but I did not know the story. Praise the Lord for His goodness in allowing the doctors to find the tumor early! Your precious Liam is adorable. Congrats to your family.


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