Life with a baby

• If you have a dog, mailman, and a baby: I guarantee you that your dog will bark while the baby is sleeping at the same mailman that has been coming the last 10 years (but only if baby is sleeping).
• When the baby wakes up before the sun and I am nursing her in the bed, I wish my husband would wake up for one little second and acknowledge that "Hey your up early-thanks," then off to sleep again.  Yeah, don't think this one is going to happen.  I'll just try not to choke him when he says, "WOW, can't believe she slept through the night."  To which I will reply, "No honey, that was you who slept through the night." 
• If your baby has a colostomy, they will soon learn to play with the bag, which of course contains an atomic stink bomb that has been declared a lethal weapon in twenty states.  And when your baby goes to grab it on the changing table and you sternly say, "No," and she replies with the cutest, biggest smile EVER, you will quickly forget the stink and let it be.  NOTE TO GOD: Please let me grow tough skin when this cute smile crosses my path again when my little one is being a stinker-amen.

I'm sure there will be more to follow one day-sorry, just had some random things to go off my mind:)

No repair

Lauren was born with an imperforate anus, without a way to use her bottom.  On her second day she was given a colostomy so that she could use the bathroom.  It's been in the plans to wait for Lauren to get a bit bigger, create a bottom, then another surgery to take back in the colostomy-TADA, and she would use the bathroom like so many others!  This was such a simple plan, and honestly gave me little to think or worry about.  Until a few weeks ago...

Lauren went in for a lower GI contrast x-ray (colostogram) that would show the surgeons where her colon was exactly located (this would be pulled down to surface of skin where they would make her bottom...) 

I got a call from the ped surgeon with the results.  Lauren has several abnormalities inside her lower abdominal organs.  Mainly, she has many connections (called fistulas) between each of her tracks (vaginal, urinary, and rectal).  This means that any fluid/object that passes from one can go into the other.  Not, so good.  So, Lauren will require repairs to the urinary and vaginal tracks.  Urology will first go in with a camera through her urinary track and see in more detail what's going on.

The part that hit me like a ton of bricks was that Lauren may never get her bottom.  Her anatomy is so unique that it may be impossible to fix.  Not only that, they are feeling that she may not even have any control over her bowels because her back lesion was so damaged.

I spent the whole day crying.  Mourning for my sweet pea.  The weekend began to feel a little better, but still could not fight those nasty little fears.  My husband said that I need to take one day at a time and to not worry so much.   Perhaps, this is great advice and I should take it.  Though, I can't help, but think about her being a teenage girl.  Will she care if others know about her colostomy, will she want it to be a secret and if so will she be able to hide it?  Will her clothes fit her OK, will a bowel movement sneak out and make a loud noise in front of others (because it does now, and the bag amplifies the sound)?

I can't help to feel sadness.  It may not be warranted, it may not be necessary, but I fear that day that she comes through the door with tears running down her soft little cheeks because someone didn't have enough human decency to not tease or outcast her because of her unique physical differences.   I wish that I could fully trust humankind to use their hearts and to be compassionate.  Sure, many will be understanding, but unfortunately their will be many that will lack basic human kindness.  Especially for those that stand out. 

I just know that I have a HUGE job of raising all my girls, especially Lauren, with enough character to handle life and the potential bad days.  I pray that each one of my girls has a full kind heart, intelligence, wit, humor, and faith.  For Lauren I pray that she additionally has gusto, fistey-ness,   Maybe then she is more able to fight off those unkind words, weird stares...  I pray that she will see the beauty that I already see in her, and allow that beauty to lead her through life.  Because I am certain that her life will be filled with joy and be surrounded by people that love and adore her.  I need to put my fears and sadness behind and allow Somebody else to take control.  

FOREVER

I know, I know, it's been forever since I have posted.  So sorry.  But, good news is that I now have wireless internet at home, so I can begin to update her blog.  I have so many things buzzing around in my head, ready to make it from the keyboard to this screen.  So, be on the look out in next couple of weeks for some things.

Right now we are currently back at the hospital, but I believe that this time it's a good thing.  Lauren had the following things happen:

7/9 shunt malfunction-successfully treated with TPA injection (broke up clots at end of catheter in heart)

7/20 shunt malfunction-successfully treated with TPA injection

8/11 shunt malfunction-successfully treated with TPA injection

9/6 shunt malfunction-successfully treated with TPA injection BUT, this time they decided to do a little more. 

Earlier today Lauren underwent a shunt revision in surgery changing her VA (heart shunt) back to a VP (to her abdomen).  We are all rooting that this keeps my little butterfly from getting sick and back and forth between the hospital.  

We are in our room now, and Lauren is sleeping.  I think the next few hours she will be in and out of sleep and some discomfort, but I anticipate her to make a speedy recovery.  So much that if all goes well we can get out of here tomorrow and back HOME!!!!  Where her big sisters are anxiously awaiting.  

Thanks to everyone who sent some prayers up high for her recovery and safety, we certainly appreciate your generous hearts.  Love to all!

HOME

Sorry for delay in blog posts-my home pc internet won't load my blog and I don't have wireless internet at home, so I have to wait till I am out and around wifi... Need to get this fixed asap.

Thanks Jamie for the thoughtful package of goodies!!!  And to everyone else that has sent such nice words for our home coming.

Things have been going really well in the McGinnis household.  Lauren has adjusted fantastically.  Her sisters adore her in every way! 

We have been quite busy traveling to doctor appts... and getting her casts to repair her feet.  ut still, wonderful.

Here are some pictures...

 

and some with her sisters... (please excuse the outfit choices-these were random moments, lol)

July 18th

On Tuesday (12th) Lauren went back to Nashville to get more casts done for her serial casting to repair her feet.  She did super.  I was afraid it would be bothersome, but she really hasn’t shown any signs that they hurt...

It was a nice week transitioning Lauren into home life.  Very quiet because her sisters were in Georgia visiting family (“Aunt” Camp).  They had a blast visiting with their cousin-going to a roller skating birthday party, aquarium, swimming, getting a pedi, jump houses....  So, when we were reunited on Saturday, the girls zoomed right past me straight to Lauren. 

Very nice to all be home. 

Moday July 11th

We were discharged Thursday afternoon.  Woohoo!  Getting home was wonderful, however turning back around the following day because of a shunt malfunction was not.   My middle child, in a classic tantrum style, stomped her foot down and yelled, “We never get to keep Lauren at home!  It’s not fair!”  I agree.  

Late that afternoon we were admitted into er.  After imaging and tapping the shunt they were able to determine that the shunt catheter tip was clotted.  After much persuasion they injected 1 dose of TPA.  Believe it or not it worked!!!!  The next morning her head felt great.  They kept us a day for observation and we were back home Sunday evening.  Ahhh, home!!!