Coming to terms...

I got a little down after Georgia failed her swallow study and this week I've had to spend a lot of time regrouping my thoughts. Blake and I went to the Temple last weekend, we ended up receiving more revelation about our older three kids than Georgia. We both were impressed that we need to care for Georgia the best we can, but we still need to stay focused on the other children. There are so many things I've let slide; brushing teeth, reading time, and other important things because I am consumed with Georgia's care. So this week I made that effort to get back to our routines. The feeding therapist who came was great, she suggested we do as many normal things as possible. So we've taken the kids out to eat, to the pumpkin patch & hay maze and other fun stuff; all with Georgia in tow. Just trying to get everyone adjusted to our new normal.

I've started feeding Georgia with a syringe when we go out, so much easier than lugging a pump and less conspicuous. In fact, that's been a huge factor in accepting this and moving forward. It's actually a very easy way to feed a baby. Way better than breast or bottle feeding. Seriously inject their food in the tummy & go. I knew today I had finally stopped mourning not being able to nurse her and feed her this foriegn way when I heard two other moms talking about nursing without feeling sad.  It's our new normal, and I feel like Blake & I are adjusting really well to it. Now we need to help our little family to feel normal & loved again. I think that's the biggest trial we're facing right now.

Part of this process is finally picking up Chloe from school.  She was developing some huge anxiety about getting picked up or rather, not being picked up.  During parent teacher conference, her teacher talked about anxiety and confidence issues. For those of you who know chloe, these are not problems we ever thought she would have!  So I knew she needed Mom more in homework & picking up from school.  I still don't trust Georgia in the car seat in long carpool lines since she still gets car sick, so I decided to walk. I think it is good for us all to get a walk everyday because we were cooped up so long.  I have a double stroller, but my four year old boy is often distracted and gets tired easy. I felt like making him walk or ride a bike would be torture. So I decided to get a triple stroller. Oh wow, it's as funny as you think and Blake makes fun of me constantly, but today he learned the value. After dragging our boys around the soccer field this morning while they're stopping to pick flowers & begging to be held, while we're already carrying the car seat, blanket, chairs, water bottles, snacks, etc....I said this is why we need that huge stroller. So the next game we pushed that huge stroller all around those soccer fields and it was kinda hard and kinda embarrassing, but by the end of the game I didn't care. So much easier. It has a seat for Cash, a place for Georgia's car seat and a place for sawyer to sit/stand in the back by me. The Big Caboose. http://www.diapers.com/p/joovy-big-caboose-stand-on-triple-stroller-appletree-45979?site=CA&utm_source=cse&utm_medium=cpc_D&utm_term=JY-021&utm_campaign=Google&CAWELAID=1338716444&utm_content=pla&cagpspn=pla&ci_kw=%7Bkeyword%7D

Not a pass, but not a complete fail.

So we just got back from the swallow study and she didn't pass. The swallow study is a test that shows exactly what's happening during the attempt to swallow. They give a bottle full of barium and watch in an xray while she swallows.  In the first swallow study, Georgia failed after seconds, the barium didn't even make it down the throat, it came straight up her nose. She had a episodes where she would choke, even on her own secretions. This time most went down her throat, but it wouldn't go all the way and she began aspirating, which means she started breathing it in her lungs. So she failed. But, I wasn't even expecting to do a swallow study this soon. If she would've passed it would've been a total bonus. AND she showed some progression from last time. They want to repeat in 3 months.

So we're back to how can we get this baby to gain weight. She's under 11 pounds.  It's funny because we were shopping for Halloween costumes last night and all she would fit in we're the little newborn ones. I've always loved those and wanted a newborn on Halloween so I could put them in a cute little onesie costume, so, she'll be in a little newborn outfit cute as can be this year ;).

This has me looking even more forward to her spinal tap. They keep calling this a neurological issue. However, Georgia is totally normal and alert in every other way. There has to be an explanation as to why those muscles just don't work!  We see the neuro who will hopefully do the spinal nov 16th. Hopefully he finds the reason for her poor swallow. In the meantime, I still have faith and a lot of hope. I feel like its a blessing that she's even come this far.  She really does light up our lives and adds such a sweet Spirit to our home. Keep praying!

Unexpected news!

So I just got back from GI doc,,,,,they want to boost her weight, gave me a broken down formula to fortify my milk. They want me to wait a week to start because she had such an adverse reaction to the last, they want it out of her system. The crazy news is they were so impressed by her progress and ability to handle secretions that they want to do another swallow study!!!  I feel so weird about the possibility she could eat!  I feel nervous, but also very giddy. It wasn't something I was expecting to hear at all!  I said, I don't want her to fail it, I'm nervous. She said, I don't think she'll fail,,,,what?!?!  Crazy. Keep praying. I set my goal date for January 1st!  Lets hope she meets her a goal. If she does I'll buy her a car when she turns 16! ;). Keep the prayers coming!

More dumb stuff,

We went in for Georgia's four month apt. So hard to believe she's been with us that long!  He's a funny guy, her ped, everything that I tell him that's bad he says, "We'll, that's dumb". Every time.  And I love it because that's the perfect word, I find myself saying it when crAppy things happen, ugh, DUMB!  He was very impressed with her neck control and everything else she was doing physically. The problem he pointed out was vocally she isn't doing all the things she should be. She doesn't laugh and she's mostly quiet. She does coo, I think. I also think she has different intonations for when shes happy or sad/mad.  I need to be around another kid her age because I can't remember what my kids were doing at this age. I do remember Chloe didn't laugh until five months. We had a friend with a baby who was the same age who had been busting up laughing since she was three months and we were constantly trying to get Chloe to do it. One day, we're outside washing Blake's car and he fans her with the foot mat from his car and when the air hit her face she laughed so hard. Blake kept doing it until she was busting up. Chloe literally has the best laugh now. These last couple days as I've been agonizing at what her ped said, I've smiled and appreciated Chloe's laugh every time I hear it.

Anyway, he wants the ENT to do another scope. He's already done two and he specifically looked at the vocal cords because there was a fear with her underlying scary diagnosis that she will never develop speech. At the time he said everything looked great. Her ped said he could see more now that she was older. Who knows, for some reason, I'm not buying it because that ENT spent a half hour on the phone with me discussing her second scope and one of the things he said was fine were her vocal cords. I go see him again next week.

Her ped also talked about her failure to thrive status. He wants me to fortify my breastmilk. I called the GI and they told me, she's had a lot of setbacks, lets give her the time we said we would and see what she'll do. Her ped called me and gave me the formula recipe and pushed me to start. Now I'm here at 4 am having been up for two hours with poor Georgia refluxing like crazy. It makes me wonder if a big part of why her nissen slipped is because I was fortifying her milk at the time, because its been almost constant reflux since her feed. This is why the GI was telling me to be cautious. I really love that doctor. I had already resolved myself to listen to them over any other doctor, now I know I need to.

Speaking of breastmilk, I am now a full 2 1/2 months ahead of her. We have two fridge freezers and a big sub zero freezer and I am completely out of space. I have some at my moms house now. Hilarious!  It's gotten a ton easier, I only pump about 4-5 times during the day and once at night if she wakes me up, if not I just wait until morning. It's totally doable, especially since it only takes me five minutes to get about 8-10 oz out. Pumping is totally different than breastfeeding.  Although I mourn that bonding time, it is nice that I can hook her up and walk away. She naps so well because she doesn't have to wake up to eat.

Good Neighbors

Today was going to be my day I was self-sufficient and not need any help. Blake couldn't take the kids to school. Georgia has been pretty good this week on tolerating feeds and throwing up. So I said I could take them, I wouldn't need to bother anyone by calling them and asking them to take my kids. Well, Blake leaves, I go out to start the car and the dang battery is dead. I call a couple neighbors and because I literally have the best neighbors on earth someone is there in a snap. The battery was just done so off she goes, driving my kids to school. I keep learning the same lesson over and over, accept help!!!

Speaking of the best neighbors, my home teacher comes for his weekly treatment on Georgia. He's so impressed with her progress. He does another treatment and says he thinks I should give her a bit of water in the end of a bottle nipple. He says even if you aspirate water, it's no big deal. Anything besides water can cause pneumonia. So I'm so scared because just three weeks ago I let her suck on a wash cloth that was barely damp and I had to suction her. I finally try it today and she swallowed!!!!! It was definetly labored, but she got it all down, didn't come back out of her nose AND she wanted more!!!  I can't wait to do another swallow study or start some therapy to further excite those muscles!!!  This doctor can help headaches & colic. Amazing!

Lesson for the week...happiness is a choice!

It's funny to me how I'll be chewing on an idea all week and at the end of the week, I can finally grasp, through life, the spirit, and leaders of the church, the meaning of the life lesson I was supposed to get.

I ended last week with fear, a little anger, and was way down. Georgia had a hard weekend she was throwing up, not handling a full feeding without discomfort. I was so scared that she had another hetail hernia and her stomach had slipped into her esophagus again. I made a choice to pray to help aleviate those fears and help me to accept it if that were the case.

I had suggested to GI that her ballon button that holds her feeding tube into place had gone bad. She's had so many problems with those balloons. Anyway, they shrugged that suggestion off as impossible. Thursday when the home nurse comes I ask her to help change the button. The button was torn to threads. I have a theory that because Georgia's stomach is so small, it starts to try to digest the buttons. We changed to a different brand this time, hopefully it solves the problem. If not im going to ask for a non balloon feeding device.

Anyway, as a worrier I noticed the steps I took this week on learning to trust and accept instead of agonizing over what I can't change. I'm realizing happiness is a choice. I used to hate when people said that. I would think, how can I just turn the switch in sad or hard times and be happy?!?!   Im realizing it's actually a series of choices we make moment by moment, day by day to make the right choice. Play Legos with the boys instead of checking facebook, make lunch for the husband instead of running and painting your toenails while the babies asleep, be nice to someone when you really want to be mean and angry. Haha!  Seriously, those little and big decisions you make throughout your day and life will determine your happiness for years to come. 

So as I'm chewing on this I get to watch conference this weekend and president uchdorf gives a talk exactly about this, which I will post when it becomes available. So there is my theory, I want to keep striving to be a more happy person, even during the hard times. President uchdorf says, enjoy the journey, don't wait for that ideal circumstance to come along that will finally make you happy. Man, am I ever guilty of that!  If only this would happen I'd be happier. I need to just make those choices that I know will lead to happiness in this life and the next and hopefully I can achieve ultimate happiness!

Bleh,,,

Everyone has a bad day here or there, I had one today and it's because of mommy guilt. I was already a huge mommy guilt kind of person, but my situation right now has taken it to a whole new level!  Not to mention Chloe has learned to work the mom guilt to her advantage.

Anyway, Georgia's been having awesome days, but today was just not one of them. She spit up this morning, but one little spit up will ruin that poor babies day.  What doesn't come out she chokes on and it starts coming out of her nose. Even suctioning it doesn't help, because she just gags and she throws up more.  So shes just cruddy until she works through it.  Also, her feeding tube is clogged and I'm having to flush it with coke. My gosh, of all things, right?!?!

So I had planned a little playdate for sawyer because he comes home from school bored everyday and mopes around all afternoon. He's so excited, but I have to cancel. Second playdate I've canceled in two weeks. It stinks. He is really acting out right now and my sweet boy is having lots of temper issues. Mom guilt super bad right now!!!

Then Blake had a late appointment so he couldn't take Chloe to soccer practice. I'm about to say, sorry no practice this week when she throws a major mom guilt trip on me. So I pack up the three kids, the baby, and all the feeding supplies. Half way through the practice Georgia's halfway through the feed and I'm feeling like super mom. I got to socialize and see the outside of my house!  So were driving home and Chloe yells from the backseat, " Mom!  Georgia's throwing up, oh gosh it's coming out of her nose!". I only panicked for a spilt second, then I stopped and listened for breathing. Luckily it was so loud I could hear it.  We were a half a mile from home, she was fine. Just a bummer my fears of an outing by myself came true and I longed for normal.  I longed for that crazy routine of drop offs pick ups and practice and activities and playdates.

The real trick now, is when I get there again I can't forget to be thankful!!!!

New normal

I have not written in a few days and that's good, because nothing has really been going on. Things are still changing for the better and that's the kind of change we want!  I'll sum up the week very quickly.

First, all the physical therapists and the last nuerologist we saw were very worried about her neck muscle tone. I'm sure if you have a child you've seen the pediatrian do this test during well checks, but you didn't think much of it, like me. Anyway, it's the test is when the grab them by the wrists and pull them up. Their little chins should go up towards their chest and tuck in while you pull. Georgia's head would just flop right back. It was as if she couldn't move it up. So miraculously this week I try, she all of a sudden can tuck her chin in!

Secondly, she has been completely weaned off her meds to dry her secretions since Saturday. I have not had to suction her at all!

I have also started doing a lot of feeding therapy with her, since no one else will!  I dip her binki in milk while she eats, she handles the little drops I give her fine. I put lots of toys with different textures on them in her mouth. I let her suck on a barely wet wash cloth during bath. She loves it. So glad because a major problem with these kids, especially when they've been suctioned and been on a ventilator, they develop an oral aversion and don't want ANYTHING in their mouths. She's doing amazing and there is no doubt in my mind this child will develop normally and swallow!

Sunday our home teacher who is a doctor came back, he does not think the progress we've seen this week is a coincidence. He felt that his treatment worked and wants to continue. Can't tell you how much I am interested in what he does. Amazing!  He's coming back next Tuesday!

I want to give credit where credit is due for a minute!  Although Georgia has an amazing group of doctors, has gotten to the right places at the right times, and we have a great home teacher who is helping us beyond belief, this progress is not the work of man. While doing scripture study I ran across this scripture; "Yea and the Lord said also that after ye have arrived in the promised land, ye shall know that I the Lord am God. And I the Lord did deliver you from destruction..." 1 Nephi 17:14.  When I read this my heart felt full and peaceful.  When Georgia was 1 month old we had doctors telling us horrible things. She would never talk, she would have brain damage, and the worst Thing any parent can hear, they said she would most likely not live long, at worst 6 month, at best ten years. I know Who has delivered her.

For now my days consist of very busy, tiring work. Thank goodness I know I'm doing the Lords work. It helps me put all of this into perspective. I know Georgia's life has a meaning and she was given to me for a reason. I'm feeling thankful for all my babies tonight and for my knowledge of the Gospel of Jesus Christ.