Tuesday, March 22, 2011

A Sigh of Relief

All of your prayers were heard.  I'm so blessed that God helped us so quickly (and the doctors).  Liv is doing so much better today.  It's amazing what meds can do.  Her breathing is normal and she is off the tube.  She started eating some Pediasure on her own today.  It's not much, but it's good to see her have an appetite. They will start the feedings in the tube tonight.  It won't be the full amount just to see how she does with it.  We will get out Thursday morning.  Trust me, it can't come quick enough.  Both Drew and I have to go through a training in order to take her home.  They couldn't schedule it until Thursday.  Oh well, it's supposed to be nasty outside tomorrow anyways! 
Whenever I'm here, I always realize how much worse this could be.  Yesterday I met a mom in the prayer room.  Her son is 4 and has cancer.  He had gone through 15 months of treatment prior to now, but it's back.  He is terminal.  The whole time we talked, she was trying to comfort me.  She came to see Olivia.  I wish there was something I could do, but she kept saying the God has a plan for him.  It's good to see that she believes that.  She said that he has opened her to a world she never knew, which I have mentioned that to many of you before.  And I know my friends with special needs children know exactly what I'm talking about.  I wish there were extra prayers that I could say for Trey, but I guess this is the best I can do.  I will always remember her and her story.  She has touched my life forever.  I have never seen someone so strong.

Monday, March 21, 2011

Can I Get a Break????

This can go in the books as one of the worst days ever. We know that nothing is ever simple for this girl. In surgery they found a hernia and fixed it. That made the surgery longer. I went to the prayer room. I couldn't stop crying. This poor thing. The other people in there gave me hugs and wished my family he best. I was starting to feel better. I love when people send love my way through text or facebook, but every single one makes me cry. I feel blessed to know this many people care. So here we are with her having trouble breathing and her heart rate up. Yeah I'm scared to death. And for about the 3rd time in her life, I'm past scared. What would I do without her? Why does she have to suffer so much? I've already gotten closer to God to help fix this. I guess he needs me on my toes. I'm so scared. I feel like I could puke. How do nurses look at babies like this? I just need some breathing room. How do I get it? If only she would eat. Why can't she just eat? How am I ever supposed to go to work? Why can't I afford to stay home with her? I can't stop crying. Why isn't she waking up? How much longer will I feel like this?

Biggest One Yet

Well today is the day for the biggest surgery she's ever had.  This is her 4 time being put under and she's only 26 months old.  She is going to have a hole in her stomach with a tube in it.  But I realize it's the right thing because she has been sick all week and won't take anything but formula.  It gets very frustrating.  I think it would be easier to deal with her delays if she didn't have all of these health problems, or vice versa.  When she is sick, she is super clingy to me.  I can't leave the room, even if my husband tries to entertain her.  I really need to start packing, but it will be even harder without my husband.  He should be getting back soon, but I really just want to get started.  I guess I feel in some ways that if we are completely packed and ready, I took care of the only thing I can be in control of today.  Last time we hit a ton of traffic and she had a seizure, so all of the delays had nothing to do with anything I could help.  I don't know what I would do without Mickey's Clubhouse, it at least lets me sit in the room without her crawling all over me.  It definitely helps in the hospital!  Wish us luck!

Thursday, March 17, 2011

Everything Is Happening So Quickly

Yesterday I stayed home with Liv because she hadn't slept in 3 days.  I needed to take her to the doctors to find out what's going on.  She just has a little cold, but since she has a tube in her nose, she really couldn't breathe.  Poor thing.  My husband and I decided that we were just going to push through with getting the gtube surgery.  This way we wouldn't have to jam a tube down her nose and tape it to her cheek, however, it's surgery for putting a tube right into her belly.  I had a pre op appointment today and the surgery is scheduled for Monday morning.  I can't believe she is going to have this so fast.  She's going to have it before we go to DC.  I never imagined this.  I hope this is the right decision.  The doctor was going to make her get it anyways, but we just jumped up the time line.  I'm sure I'll write in on Sunday saying how nervous I am.  Where's the relief?  Where's the day of relaxation?  Where's the calmness?  When can I breathe again?  I guess whenever she walks herself over to me in the walker and gives me this huge smile of unconditional love.

Tuesday, March 15, 2011

Frustration!!!

I guess I've been lying to some of you.  If I've talked to you in person, I've probably said that everything is going well.  I guess I've been doing that throughout most of Liv's life.  I tried to make it seem not so bad, but at times, it can be.  I don't want everybody to think everything I say is always negative.  I mean it seems like she might get better at some things, but then something else will come up.  It just seems as if there's never a break.

Everything was fine about the first week of the tube, but I'm ready to pull the plug.  I think we can do that as parents, right?  Liv has stopped eating all together.  I was under the impression that I would be less stressed if she doesn't eat a large amount, but nothing at all.  Of course that stresses me.  And on top of that, she wakes up every hour.  That's more that when she was an infant.  I think her stomach is hurting or something.  We are going to try this new kind of gas relief tonight.  I really hope it works because I'm running on empty.  I left a message for the doctor so I can't wait to hear from her.  We need to come up with a better plan.  Besides, she is feeling heavy.  I think she is gaining too fast.  I just feel like I need a break.  I would love to take a day off, but I would just worry and think about her the whole time anyways.  Maybe a spa day would be nice, but we can't really waste the money.  I guess just a good night's sleep would help.  Spring break can't come fast enough!!

Thursday, March 10, 2011

It's Been Awhile

I guess I've been busy and for once things are going smoothly.  No doctor appointments until April!!  Feeding tube is working well.  She gained 2 pounds in a week.  She is walking with holding our hands, and does a great job at it.  She likes to stick out her tongue now that she knows how.  Still loves her baby.  The only complications are not getting a full night's sleep.  She gets up twice and we have to get up for the pump at 2 am.  So we are still tired when morning comes.  She has been in great moods and no sickness!!  She's such a delight!  She is full of hugs and kisses.  She actually started pushing Drew away when he hugs me because she wants hugs.  She would rather spend the day sitting on our laps than playing.  But we do make her play because that is a huge part of her development.  I can't wait to get home and give her a great big hug.  I hate missing her at work!

Saturday, March 5, 2011

Livy's Baby

I bought Livy a baby today.  She's never played with one except for the one time her speech therapist introduced it to her.  She instantly loved this doll.  I'm shocked that she even knows what it is or what to do with it.  She was rubbing and kissing it.  It was the cutest thing ever.  She also tells it secrets, even though she tells loud secrets.  I posted a pic on facebook so check it out.

Thursday, March 3, 2011

We Did It

Liv pulled out her tube this morning.  I figured that we would put it back in when Drew got home.  I was nervous.  I prepped everything and got started.  We did it!  All by ourselves.  It's the best looking one too.  I guess it didn't take too long to feel more comfortable jamming a tube down our daughters nose. 

A New Trick

Yesterday when it was time for a bath, Liv pulled herself up to a stand for the first time.  She used the side of the tube to pull herself up.  She was so excited to get into the bath that she needed to peek in at the water before it was ready.  She is getting stronger everyday!  I can't wait until she can walk!

Wednesday, March 2, 2011

Life at Home with the Tube... So Far

Things aren't going as well as I had hoped.  I kept feeling dampness around her last night, only to learn this morning that her plug wasn't all of the way in.  That means she was leaking stomach acid on her bed all night.  WHOOPS!  She was running a fever and we gave her some Tylenol.  Then she puked 10 mins later.  Thank God a nurse is on their way here for after care.  I mean if it wasn't the tube that made her puke, then what was it?  Our shipment of all of the supplies came, which is huge.  I feel like our home is being overrun by our daughter between toys and medical supplies/medicine.  On a good note, the pump is small and very transportable.  That will make the trip to DC a little less stressful.  The pump goes in a small book bag and it hooks up to her tube.  People won't even notice anything is happening.

Well the nurse just left and I'm feeling a little more confident about all of this.  I hope it works out tonight.  Wish us luck!

Tuesday, March 1, 2011

We're Still Here

Everything went yesterday.  There's always hiccups in procedures with Olivia.  We knew that, but I guess for some odd reason, we thought this would be different since it's a 15 min procedure.  We went back to the waiting room at 11.  They checked her vitals and we thought everything was moving quickly.  They were supposed to take her to the table at 12:30.  Liv has a seizure at noon.  Since she had some on Saturday, they were concerned.  We told them that we knew coming in today that she would have seizures, but since she usually doesn't have 2 sets of them in a week, they needed to get it cleared by neurology to proceed.  She didn't go back to the table until about 2:30.  So much for a quick 15 min procedure.  We got up to the GI suite around 4.  They put the feeding tube in around 6.  She did well with her night feedings.  She of course is teething (why not?).  And not just 1 tooth, it's at least 5 teeth.  We are waiting to get some orajel so she will take a nap.  In order to go home, we must have training.  The training classes are booked today, unless they get another nurse to help.  If so, we can do the training at 4 then go home.  If not, we are booked for a class tomorrow morning.  We should be home tomorrow evening at the latest.  As part of the training, we have to place a tube down Liv's nose.  We have to do it before we can go home.  I'm not looking forward to it, but it's just another thing that many other parents experience, so why not me?  I feel like I could be a nurse from all of the things I have to do for my daughter.  Maybe I got into the wrong profession.  It looks like Drew got her to fall asleep, so it's time to go eat!
On another note, I hope my father-in-law is doing well.   Please keep him in your prayers.  He was on the OR table the same time as Liv yesterday.  He had to get a pacemaker.