Nursing Help!

Yesterday Livy's insurance company called me to update their information on her health problems.  They didn't have it documented that she has a g tube.  Since she gets overnight continuous feeds, she was approved for 8 hours of nursing care during the night - 7 days a week.  This is going to be such a relief on us.  The milk is only good for 4 hours, so after that, we have to wake up and change the milk.  Not to mention the times she gets up for a binky.  Last night was rough, so I'm super glad that we will be getting help.  Her tube came unplugged and her stomach acid and milk all leaked out onto the crib.  She was so upset.  At least we won't have to worry about this happening anymore.  We will be interviewing nurses next week and then getting it started.  Because she is considered a level 1, she is only allowed to have a registered nurse.  Even better!!  There's always hope!

A Good Month

So for the past month, Liv has been doing well.  It usually works like this.  Bad humps then good.  We just work on surviving the bad ones to make it to the good.  Then we easily forget how hard it was and get slapped with another hard one (really not trying to be sexual). Of course we are enjoying this time.  Liv got a button tube place back in and it's working great this time.  Feeds are great.  She is up to the 7th percentile in weight and we will be discussing what feeding strategy we are going to use when we go to GI on Tuesday.  As some of you have seen, Liv took her first steps this past week.  Yes it was with a medical walker, but it's just like her walking alone.  I can't stop watching the video.  For those who missed it, it's posted on my facebook.  The walker she was using was one at her daycare.  We had her fitted for one and we are just waiting for it to come in.  They said up to 3 months but really don't think it will take that long.  We are getting anxious for it to come in so she can practice all day.  We went swimming yesterday and she was using her float.  She was feeling adventurous and would swim away from us.  It's good to see her getting more confident with swimming.  I would like to get her just a vest this summer so she can really start swimming.  At Liv's endocrinology appointment we found out that she will probably only reach 4'6" so she will need to take growth hormones.  They aren't starting yet because she is a good height for her age now, so we are just seeing what happens.  They will also check her ovaries at the age of 9 to see how damaged they are.  They will then start her on birth control to help her get estrogen and a period.
Summer is almost here and that means lots of time with my baby.  I am going to be taking her all over and tiring her out.  I plan to do something everyday.  She is not just sitting around the house.
Here's to a good month and a future of time off to spend with my baby!!!

Catching Up

So things have been busy because Liv is healthy for once.  I keep busy by playing with her all of the time.  She said mama for the first time yesterday.  She used to call me na na.  My husband and I have been bracing ourselves for her to get tested and the results to say that she is MR.  I'm trying to accept it, but it's hard, she's my only child.  Maybe she just has delays, but I think it's more than that.  She could say about 4 words, but she forgets hi and bye.  She forgot all done but now remembers it.  On a good note, she has been laughing like crazy.  She has been in such great moods.  She laughs all day long.  She loves to watch Mickey Mouse Club House.  She is such a great child.  She is starting to look more like a little girl than a baby.  I hope she starts developing more.  She does have more strength and loves to practice walking.  Next week she has her appointment to get fitted for walking devices.  I hope that will help her have independence by walking herself (with the device).

Feeling Better

So I made a plan for myself.  Since our house is a disaster zone, I have decided to clean one room a day.  That way I'm not overwhelmed by cleaning several.  Plus I'm a scatterbrain when I clean.  I clean up one thing and then take it to a room and clean something in that room and so forth.  After an hour, it doesn't look much different.  I'm not letting myself do that anymore.  One room a day and I'm sticking to it.  Also I went to pilates last night.  I kinda thought it was too easy.  I have pilates dvds that are harder, but I pay for a gym now and wanted to take advantage of the classes.  I'm finally making time for myself.  It felt real good last night.  So I'm hoping for that tonight too with modern dance!

ugh

I haven't written even though this is probably the time I should be venting the most.  I can't believe how many times we have been in the hospital lately.  It's been 5 times in 2 1/2 weeks and a total of 8 days in 17 days.  I really don't feel like I can handle anything else.  I've spent three weekends in a row sleeping there and I can't do it anymore.  I used to live for the weekends to catch up on sleep, cleaning, and relaxing and I've experienced none of that.  I feel like I need a maid to live here and not get paid because we all know that teachers are poor.  I need a break.  I really don't want to resent my daughter, but I hate that I have no life.  I knew having a baby would change things, but I had no idea it meant giving up everything, and I seriously mean everything.  I never get to go out with friends and I never get to go to bars and see my husband play and I never get to go out with my husband.  I mean who is going to watch my daughter.  I can barely handle it, so how is anyone else going to help?  I would give anything to not have to work.  I just need time.  I can't work all day and then deal with a sick child all the time.  I love my daughter to death.  Why does she have to go through this?  Why did this happen to our family?  I thought I was past this point, but now that there's so much going on, I'm back to it again.  I feel like I'm losing hope and faith.  I never in a million years thought this would be my life.  I never thought I would have a child that can't walk or talk to me.  I usually look at the positives of her milestones, but I just don't have it in me now.  I feel so burnt out.  I wish we had the money to get away.  I would give anything to go to Disney.  Liv just adores Mickey.  I'm sure it will take us awhile to save up that kind of money.  I just want to get away, even if it wasn't Disney.  We need a break away from this place.  We just need to go somewhere that we can enjoy the day and relax.  I don't think I know what that feels like.  Considering the last escape to AC resulted in a seizure on the way home.  We got to put over on the side of the highway to undress our daughter to give her meds rectally to get her out of the seizure.  I think I'm going to try to get out of work again, but I don't know how easy that will be since I was out 6 months last year.  I thought spring break would rejuvenate me, but we spent time in the hospital instead.  I would love to have another child, but I mean really, how could that be feasible?  I would love to know what it feels like to have a child more on their age level and one that eats.  Don't get me wrong, Liv is great!!!  She is so affectionate.  She is my life.  But I just wish I didn't have to give so much of it up!

At My Wits End

I know it's been awhile, but that's because Liv has kept me so busy.  I really haven't gone to work and my husband and I haven't been sleeping.  Liv is in pain.  I've seen 3 doctors and talked to 4 other doctors this week.  She is on meds, but she is still in pain.  I really don't know what to do.  We are going to give it one more day.  If she is fussy tomorrow, we will go to the ER.  If they can't do anything, we are going to ask them to take out the tube.  Her eating more and gaining weight at the cost of her being in pain is not acceptable.  I'm so burnt out and feel completely helpless.  I have done all that I can.

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.

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!

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.

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!!

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!

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.

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!

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!

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. 

This is It

Well at 11 am we need to arrive at the hospital for Liv's procedure.  I'm mostly nervous about not being able to give her food.  She is cranky when she is hungry (just like her mother).  I have to wake her up at 8:30 to give her meds while she can still take water.  I still have to pack our bags.  Ughhh  I hate sleeping at the hospital.  They are the only nights I've been away from my husband.  Well prayers, fingers crossed, and hoping for a quick, easy procedure and no seizures, please!

All Systems A Go

Well we were cleared for her to still get the procedure and feeding tube.  In two days, whenever I look at my daughter, there will be a tube coming out of her nose.  When we go to the Epilepsy Walk in DC, she will have a tube coming out of her nose and we will have to take all of the machinery with us.  Oh geez!  I guess I never realized anywhere we go, we will have to take all of the equipment until just now!  But it will make her healthier, I think.  I think it will sink in even more on Monday.  Who knows, maybe a miracle will happen and she will only be on it for a month!  Bless my child!

Oh What A Night!

Ughhh.  Liv had a fever of 103 and meds weren't helping.  I guess it's because when we gave her ibuprofen, she puked it back up.  We kept putting wet, cool compresses on her, but we could only get it down to 102.  Liv likes to take up most of the bed and she would not let us put her in her room.  Besides, when she pukes, she doesn't turn her head, she just chokes.  So when she throws up, I get scared to put her in her room.

On the upside... we got Tylenol this morning and about 10 mins after taking it, she started to feel better.  She is playing around with her toys right now.  Drew is out getting her prescription now.  I still hope for the procedure on Monday, but I have been told it's doubtful.