Silver Boobs

Ok, someone gave me the award system. Haha!  Somehow it is encouraging!

1 month - glitter
2 months - brass
3 months - bronze
6 months - silver
9 months - silver with gold nipples
12 months - gold
18 months - platinum
24 months - diamond 

Doctors, can't live with them, can't live without them ;)

Georgia didn't gain any weight last week and that had everyone crazy. The dietian told me add oatmeal, the nurse said that would clog the tube, another doc said coconut oil. I was so confused by the end of last week. Randomly at church this lady comes up and she's speaking my new language to me. "How are her feeds going?  Oh, how great she can do bollus!  I'm like wait, are you a nurse?  No I'm a dietitian!!!  Just who I would love to have a convo with today, thank you!  So she tells me, why not add olive oil?  It has all good fats, a lot of minerals they need, helps with constipation. So I run it by docs and dietitian and they love the idea and she gained half a pound this week. I'm grateful that lady was put in my path and I'm ready for some dang doctors who know what they're doing!!!!

I've been pumping for six months straight and this week when I was complaining one nurse said, I know a lady who pumped for two years for her tenth child. Well,,,,guess what,,,I'm not going that far!!  I pray I can make it to a year, then Georgia better decide to swallow and drink some cow milk like the rest of us!  I say this, but I'm a little worried if they say its best for her, I will end up pumping until she's ten. Haha!  No!  On this exclusive pumping web site they have these awards they give to themselves for each month they pump, they'll say, I have bronze boobs with silver nipples. I need to ask someone what my award is after six months, silver boobs maybe?!?!  Can I make it to gold?!?

Georgia is starting to vocalize & laugh. So thankful for the little, but strong voice that comes out of her. She's a sweet tempered baby, but will put you in your place quick now that she's learned her angry scream!  Ah, gotta love girls!

I'm still struggling with patience with my older kids. My friend told me never pray for patience or you'll get more lessons to help you learn, so when I pray I try to avoid asking for patience ;). I do ask to be able to meet all their needs and for me to be able to be kind and gentle. I was proud of myself this week, they all did chores ALMOST everyday. So funny, they love chore time. I played with cash a lot in the mornings. They watched tv a little less this week. We're getting there!  I can feel myself coming back, getting my grasp on life again, slowly.


Oh, and the best, her ped has been hesitant to say she's out of the woods and today he basically said so. He was so impressed with her development. He said, I actually have no medical reasoning about what's happening here, but I do have some Divine answers. Yep, Georgia's a walking, talking miracle!  Proving each doctor wrong with every day she lives past six months!  Every time she coo's. Every milestone she hits!

Family Therapy

Georgia's finally gaining some weight. She's up to 11lbs 1oz. The running joke for our family right now is when Blake buys diapers he buys a big box and when I buy diapers I buy the smallest pack in hope that she'll finally grow out of size one diapers!!!  They're  finally getting a little snug, so we're getting closer to size 2 diapers. She'll be six months, she's so little still. I can't go anywhere without people asking how old she is and gasping how tiny she is. Some people say it casually, some people go on way to long asking a lot of questions about how much she weighs and what I'm feeding her. When they cross the line, I finally have to tell them the whole story, then they feel sheepish, it's helped me learn to keep my questions, curiosity, and comments to myself.

 I finally got her in some therapies, and its been really good for her and the whole family has joined in. We all gather around the tummy time blanket and play with her. She has brought so much love in our home. I've mentioned this before, but it cracks me up how the dialect in our home has become full of medical jargon. Blake was watching her the other day and he says, "Wow, great motor skills". Chloe told me, "Mom, I'm so proud she found out she has hands, now we've got to show her her feet."  (Georgia's hands never came together like other babies do, so we'd put them together for her, now we show her her feet, so she'll start to grab them.). I hear things everyday that I know other people would never hear from their kids.

We went to the Festival of Lights parade last night with the whole family, and believe it or not, that was therapy for Georgia. The feeding therapist told me that too many families shut themselves in and don't go out. She said, if you're an active family (which we are) stay active, get out, take trips, build those experiences. Georgia will develop behaviors based on not having the normal experiences. It's honestly therapy for the whole family, we need those experiences as well. We went with some dear, dear friends who just moved back from Colorado. It was so nice to see our kids play together and have fun. It was nice to visit with a friend. Most of all, I really love to be with my husband, he makes me laugh and is such a fun dad. Georgia didn't know what to think at first, but she fell asleep soon after while I pumped milk into her belly on the parade route surrounded by hundreds of people. She's getting used to being a part of our wild family ;).

I keep envisioning her life as she grows, and there are so many unknowns, but I can picture her running around with the kids doing all the stuff they do in her own special way.

The hurrier I go the behinder I get

When I was growing up, my grandma had a sign hanging in her kitchen, it said, 'The hurrier I go the behinder I get'. It used to confuse me so much and I'd ask my grandma what it meant and she'd say, sometimes going to fast will slow you down. I'd get even more confused!  But grandma you can't go fast and still be slow,,,,anyways, that memory popped on my head today as I pushed Georgia's feed in a bit faster than usual because I had somewhere to be. She ended up refluxing and we were an hour late leaving the house. It was a lesson I can relate to so many aspects of raising her. I want to push her so hard.  Push more calories, more ounces, more therapies, more doctors, more tummy time. Why?  Because I want her to do everything else on time, normally,,,to prove she's normal, nothing's wrong.   She needs to hit all her milestones because she didn't hit the first & most important one,,,,eating. 

Everytime her nurse comes, she tells me, "remember, Georgia does everything on her own time". It's so true. She's always waited until we're all worried before she just decides to do something. I need to slow down, enjoy her and let her grow and develop. It seems like when i try and push her, she regresses. She's proven us all wrong up to this point and I have more faith now than ever that she's going to eat,,,when she decides to ;)

This is probably the most honest post I've ever written. I just want to clarify, if there proves to be something wrong and she doesn't hit her milestones I'm okay with that. Just having an undiagnosed child with an uncertain future weighs heavy on your mind. If she skips other major milestones we are looking at a very serious issue. It's hard to deal with that threat, when you don't know what it will look like. So this post is about needing to enjoy who Georgia is, not try to push her to be what I want her to be.

Unwearyingness

Scripture study tonight; Helaman 10:5  And now because you have done this with such unwearyingness, behold, I will bless the forever; and I will make the mighty in word and in deed, in faith and in works ; yea, even that all things shall be done unto thee according to thy word, for thou shalt not ask that which is contrary to my will.

When I saw the word unwearyingness it struck me. I looked up the definition; the act of being unwearying.

unwearying - showing sustained enthusiastic action with unflagging vitality; "an indefatigable advocate of equal rights"; "a tireless worker"; "unflagging pursuit of excellence"

indefatigable, tireless,unflagging

energetic - possessing or exerting or displaying energy; "an energetic fund raiser for the college"; "an energetic group of hikers"; "it caused an energetic chemical reaction"

I'm trying to unwearyingly exercise my faith, the blessings are worth the hardships. 

The good, the bad, and the ugly

We've made it through the cold. It was an easy one for me & the older kids, kids didn't miss school, I didn't even notice I was sick. However, miss Georgia had quite the different experience. She stopped tolerating feeds and just felt yucky. No pneumonia and her doc fought to get her the rsv vaccine & got it so yah!!!  The stinky thing is she dropped A LOT of weight. She's back down to 10lbs 6oz, dang!!!!   There are new borns who weigh that and shes 5 months old!  We'd just got her up!  But she's back up to full feeds and taking 4 oz every three hours, which is so great because there was a time I thought she'd never take more than 3 oz!  She's still on just breast milk because she had such a bad reaction to formula, so for the foreseeable future it will be strictly breast milk. I'm pumping so much it hurts and that's all I will say about that,,,

The good/cute thing she does is,,, I had tried so much to make her love tummy time. She has very low muscle tone in her arms/upper body. On her tummy she just lays there like a newborn & screams. So I put her on tummy and helped her roll over. When she got to her back I'd cheer & clap like crazy. She loved it, she goes crazy kicking and smiling. So cute and it had the right effect. She loves tummy time and rolls over. If you don't cheer for her she yells at you. So funny and she's getting stronger.

I was not going to post this, it's a little ugly, but it's true and this page is my therapy. I took Cash, my two year old  to dentist this morning.  Blake's out of town for a family emergency and I thought I'm a big girl I can take my kid to dentist. Then he freaks out and won't sit or anything. The hygienist says no problem, we'll get an assistant to help (I told her Georgia had severe reflux that morning and I had to hold her upright). Then the dentist comes back you can tell he's not going for it. He says we like mom to hold so we're not creating a bad experience, cant you get a car seat?!?  I drug Cash out to get cars seat then I drag him back in as hes screaming.  I'm kinda mad at this point. When we got back in I told dentist I was so uncomfortable with the arrangement.  He says he won't proceed then. I say why can't someone help with my two year old, he says, we already gave you that option. I said yes and I agreed to that. He says again, well I just don't feel comfortable proceeding today. I keep suggesting options on how they can proceed and help him. The dentist just says over and over, I'm not comfortable proceeding. Finally, after a few minutes of this I realize he's kicking me out. So I get up and say ok so we need to go?  He claps his hands and says alright, like it was my idea. I just let them lead us out. At the counter they say, we couldn't do the exam on him (like they even tried).  I walk to the car, I realize they didn't even offer to reschedule. So I go back in and say what can we do to make this work and get him seen?  He again relayed to me, through the receptionist, he didn't want to proceed and they don't give me the option to reschedule.  So I leave again and I get in the car and just start crying. For those of you that know me I literally never cry. I must have been due for a cry because I literally cried for the longest time. I cant really express why it hurt me so bad. I think its because i was just starting to take my life back and feel empowered and feel like i could do life even with a special needs baby and three other little kids and he took that from me and made me feel small and helpless again. I remember Sawyer was afraid of the dentist and they'd give him a stuffed animal and talk with him and offer cool toys. They literally tried nothing. Georgia's nurse who comes to do weight checks says it was probably because I had told them she was special needs. If she would've choked they would've been liable. I just wish he would've kicked me out before I wasted over thirty minutes there and drug Cash all over the place. Poor Cash probably thinks dentist are horrible people that make mommies cry for an hour ;). The good thing is I called my insurance company and they found  us a dentist close who accepts special needs patients. I'm hoping they'll be more accommodating.

So there it is, the good the bad the ugly. My life is full of all those things, but it is good and thank goodness I know there's something much better waiting for me and sweet Georgia!  Heavenly Father has a plan for us & I'm trying to learn all I need to learn & be a good example here on earth!

Sick baby

I've been worried about cold season and this week and when Chloe came home with the sniffles I was bracing myself for the worst. A week after Georgia left the nicu she got a cold and it was so hard to keep her breathing passage clear. Well she's sick now and aside from wanting to be held constantly and throwing up after her feeds she's doing great and breathing fine.

The throwing up I'm sure is because of mucus and the fact that you loose appetite when you're sick. A typical kid would refuse food, Georgia can't tell me when to stop pumping food in her belly. I get so worried when she throws up though. Can't help but be reminded of the constant throwing up after her hiatal hernia and I also worry about her aspirating or breathing in too much and getting pneumonia. I think a lesson I need to learn in this life is STOP worrying.

Whoops!

Everyone warned me it would happen and it did last night,,,Georgia's button popped right out of her belly. She was sick all night with a little head cold so she was in and out of bed. Well at one point at four in the morning I realize she's soaked. I open her Jammie's and, yup, panic!!!  Her button has ripped out. It doesn't break skin, but that  hole is like a piercing it closes and it closes FAST!  You have to get it redialated if its out for more than a couple hours. Needless to say I was freaking out hoping I wouldn't have to make a trip to the hospital. I go to push it in and it's tight, way to tight to push in. She's screaming as I'm shoving this button back in her tummy and its just not going in. Finally, I remember what one of my new best friends told me about putting in buttons, that its easier if you shove it down with a q tip. I run and get one, put a glob of ky jelly and pop, it went back in. I picked up my screaming baby, and remember when I used to ask the nicu nurses how they inflicted pain on little babies. They said they could because they knew it was for their good. That sunk in for me last night. Didn't want this little one back in the hospital and I just did what needed to be done even though it sucked doing that to her. I told her nurse today and she said I did the right thing and we both laughed at how far I'd come from freaking out through her first button change that she ended up having to finish for me. Ugh, my friend I mentioned above told me it happened to her daughter three times this week, I better get used to it ;).

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.

Visits with doctors

You know when you take your kid to the doctor and there's that list of problems and you don't really ever read them. You read the first two or three, check no, then start skimming.  After that you just start marking no on all the boxes without even reading.  Well,,,I have to read all of them now and mark yes A LOT and if you say yes you go to the bottom and explain. I get to my doctors visits the full thirty minutes early so I can give them my three month olds long medical history. Just my new normal ;). It's ok, I'm ok. Just noticing.

I saw Georgia's GI doc today. If anyone ever has a child with reflux of gastro intestinal issues, man I cannot believe how wonderful this whole office is. Dr Gayle Horvitz is her GI doc and everyone, the other docs, the nurse practitioners, the nurses, and staff are AMAZING. The nurse I talk to on the phone all the time comes in to check on me, gives me a big hug!  She's the nurse who helped me get into the hospital after Georgia's nissen fundoplication slipped and no one would listen. Had a great visit. Want to do another weight check in a few weeks because she's failure to thrive, but so was Chloe and they never feed Georgia while shes in the hospital, so I'm not to concerned. She's already gained a pound in three weeks!

After the appointment I stop and get gas. Simple task, shouldn't be a problem. I only have cash, so i take out her whole seat to go pre pay. I get back to the pump and I'm thinking I just can't put her in the seat and pump, so I'm holding her seat trying to select my fuel grade and put the pump in then I put her in the front seat and talk to her while it's fueling. I'm sweating and exasperated wondering why I didn't just send Blake to fuel me up. Another mother across the station fueling up gives me a smile like, oh you first time mom,,,just leave her in the seat. I would if I could trust her not to choke as soon as I walk away!  The joys of motherhood. Just when you think you got it down, you get schooled.

Another cool development is a man in our church is a pain management doctor. He is also our home teacher, of course, because that's how Heavenly Father works. He puts people in your life who can help at just the right moment!  A home teacher is someone the LDS church assigns to come visit your family in the home to provide spiritual upliftment in the home, help, or a blessing. In essence, you always have someone to call when you need help. Anyhow, he's a D.O, which I'm having a hard time understanding exactly what kind of medicine he practices, but he's a specialist, and it sounds like pain management. I told him the spinal fluid theory and he said he suspected as much, and now I'm remembering he said that from the beginning. In his work, he does a lot of spinal and cranial work. He tells me he is trained in this kind of cranial manipulation. It's hard to explain, and there are very few docs who even do it. Chiropractic work is a branch off of it. He explained it as healing with hands. It sounds weird, but he goes to work on Georgia and it looks like he's massaging her head. He says the part of the skull that relates to the cranial nerves is tight. He massaged it and says he doesn't know if it will help, but it certainly won't hurt. He's coming on Sunday nights to do treatments on her!  Wonderful!

For all of you who think its cooky,,,when he was done with Georgia he tells Blake to lie down , he'd show him how it felt. He starts and says, "Huh, you are tight on this side, it's like you got slammed in the head recently.". Funny thing is, Blake got into another car accident this past Friday. That makes two in three weeks, luckily neither was his fault!  Anyway, he got hit upside that same side of the head with the airbag and he has had the worst headache ever since. Brother Higgins did his treatment and Blake said it was instant relief, headache gone. Honestly, after being somewhat educated on it last night, I don't know why more people don't know about it and use it. I have two people with chronic pain I want to refer to him!  I'm so glad he's helping Georgia!!!

Hope

Ok, I've decided I don't dislike all neurologist,,,I found another one I liked yesterday. He said there is still a fear this could be a progressive muscle disease. However, he says he would not recommend putting her through the tests to prove or disprove it. He said this could be cerebral palsy also, but there is so much of a spectrum, its immpossible to predict how it will affect her.  Cognitively & physicaly she looked fine, except a few tone issues (maybe,shes still so young and has had so many set backs) in her neck and cheeks.  Time will tell. The interesting thing is, he has treated a patient with similar issues. He cautioned me on getting too excited because these swallowing issues are so diverse and can be caused by a number of small issues. However, because of the similarities he thinks it's worth getting a spinal tap to make sure there is no fluid on the spine. That's what the other patients problem was and simple meds fixed her problem,,,,AMAZING!  It's a renewed hope!  I have to wait to get an appointment with the neuro who will do this test, then wait for the test. Georgia's ped is going to try to speed up the process. If you read this blog just pray from now until that time that something that easy could fix her problems. Either way, he gave her a script so we can begin to receive therapies and a nurse who will come into the home so I can have some help. So productive visit and we love our little toot no matter what the future holds!

Making time part dos

I think with four kids anyone feels strapped with their time. Add a little one with some special circumstances who needs extra care and your time is super strapped!  My mom wanted to take the kids over night last night and I decided it would be a good time alone with Blake, so I sent the kids off. They came home this morning a hot mess. Chloe walked in screaming my name all around the house. When she found me she was in tears. She thought i was at the hospital again. Ugh. Blake was heading out to church and was going to take the kids (I was staying home because Georgia had spit up that morning and was not tolerating feeds well. I kept venting her today and now she's fine tonight. Might have been something I ate back on August 5th ;), thats the milk i dethawed today)  Anyway, I told Blake to leave them at home because they were all whining and tired. We went into the preschool room and put puzzles together & played games. Georgia played on her quilt the whole time. When Blake got home after church Chloe told me, that was the best day of my life. Wow!  Sweet angel just needed some quality mommy time. I feel that Georgia needing less suction and tolerating feeds so well has allowed me a lot more freedom and I need to be wise on how I use that time. It's so easy to get caught up in all things Georgia, but the other children need me too.

Progress vs. Progressive

When the Doctors talk about this disease that they say Georgia has (that she absolutely doesn't have) they keep using the word progressive. They feel even though she's developing normal now, besides the swallow, the disease will progressively spread and begin to affect other parts of her body. So all week the word progress has been on my mind.

Right now, I'm seeing some definite progress. Georgia rolled over twice this week. When you hold her in a sitting position she totally supports herself. She's talking. It's so cute to hear because you can tell she loves the sound of her own voice. Infants with this progressive disease can't vocalize by the way because their vocal cords are paralyzed as well,,,,hmmmm ;). The most amazing progress, and I think it speaks volumes is, Georgia couldn't handle secretions when she left the nicu. Even on a strong dosage of Robinol to dry out secretions she would constantly choke on her own spit. I was looking into vital stim shock therapy for her (electrons placed on her throat, would provide a shock to stimulate those paralyzed muscles). Anyway, they told me they won't do it unless she can handle her own secretions. I have noticed she's getting better lately. I never have to suction, so I decide to take her dosage down to every eight hours, so three times a day. She handled that perfectly. So with my home nurses pressuring I took her down to every 12 hours, twice a day. Also, the dosage shes on was formulated for her at 8lbs, now shes 10lbs, so its a lighter dose than what she should be getting.  She's having a little bit of secretions, but nothing like before. I'm going to leave her here for awhile and let her learn to deal with it. Basically, this tells me she's learning to SWALLOW!!!  She's not drooling them out. Progress, not progressive!!

The other major progress is spiritual in nature. I had a friend tell me that she missed those moments and the time she had with her sick daughter because she felt so close to the Lord during that time. She said time goes on and you forget and life starts going again and you get caught up again. I'm having a friend write on my family room wall again. It's from Thomas S. Monsons talk, https://www.lds.org/general-conference/2008/10/to-learn-to-do-to-be?lang=eng. "May we, learn what we should learn, do what we should do, and be who we should be.". It's so simple and during this trial I've had such a desire to do this, just learn and do and be what the Lord expects of me. I've been surrounded by people who serve and love how we are supposed to.  Dinners, phone calls, texts, help with leaky basements and roofs, and a home visit to get my hair done. Service that helps me feel Gods love for me and my family. 

I want the quote on my wall because long after Georgia has developed and outgrown her problems I want to always remember, I want to remember to continue to learn, to do, and to be who I should be!  Keep progressing and growing in this life. We are all here for a reason, there is a plan!  If we learn what we should learn, do what we should do, and be who we should be there are great rewards!

Hairy ears,,,

I try not to be dramatic, but I'm seriously traumatized by all I've gone through these past three months. I had to see another nuerologist yesterday while trying to get Georgia into therapies and after all these dang nuerologist have told me, I don't like nuerologists. So as he's doing the exam I'm so nervous and just waiting for him to start saying scary things. I had mentioned I was worried about her grabbing her ears, so he takes a peek. He looks in and says, "WOW!", so urgently. I say, What!  I'm so worried. In a very serious voice he says, "her ears are very hairy!". Fear runs through my body. He doesn't look up and goes to the other ear, "wow!", he says again. My blood runs cold. "What does it mean", I say terrified. He look up and probably sees the fear in my eyes. He starts laughing, "it means she has hairy ears, nothing more.". I feel so stupid.  All last night I have terrible dreams about hair coming out of Georgia's ears. Oh man, I need a nuerologist!

He gave her the exam and she qualified for physical & feeding therapy!  Yahoo, she's finally getting some services!!!  He had no other suggestions except that as she grows and develops we'll know more about her diagnosis. Ok, I like one nuerologist ;).

Making time.

Tonight as I'm doing my nightly ritual of pre-measuring bottles of milk for the night so I can just dump them in as alarms wake me up I hear my hubby call from the next room, "Can you bring the toe nail clippers in?". I've always clipped my hubby's toenails, but not lately. I go into our bedroom very much annoyed about having to do this. 

As I start to clip his toenails my heart softens, service for others usually has this affect!  I start to think about his day. Blake got up early and attended 3 church meetings today. He came home cleaned my house, gave the kids their bath, and brushed teeth. This morning when he woke up he realized I'd been up for awhile and gave my sore shoulders a rub. He takes the kids to school every morning, and swims with them at night. Our flooded basement and leaking roof weigh heavy on his mind because all financial burdens fall on him. There's no days off, being a business owner means no fall back. 

I decide to rub his feet until I hear his breath go deep. I fall a little bit more in love and remind myself that my eternal companion is the most important person in my life. I need to make sure he feels that way. 

Reminders from Heaven.

Chloe's friend, one of my good friends daughters, got baptized today. I really wanted to go to support my friend and watch this sweet girl enter the waters of baptism. Such a neat thing to see and for Chloe to see. She's so sad she has to wait until she's 8 to follow the Saviors example. Anyway, we left the house at a quarter to nine and got back at 3:00. That's quite a big outing for Georgia Mae and for me, but we both did great!

When we got home Georgia was sleepy and hungry, so I got her feed going and put her in her little nest. I start to walk away to do some dishes when I get a gentle reminder to plug her into her heart monitor. I'm so distracted today that I put her pulse ox lead on and walk away without plugging it into the machine. Another gentle reminder sounded the alarm to remind me to plug her in. I walk away knowing this is not the first time I have had heavenly help in her care.  I've long been aware of the angels surrounding Georgia, protecting her on this journey, but in that moment I realize they're surrounding me as well. 

I have often wondered to myself and close friends, how will I keep this baby alive?  I'm not medically trained and even trained professionals have a hard time with her. I know that all that has happened; suctioning her as she chokes, knowing I needed to call a doctor when her nissen slipped, and performing CPR that weekend before her surgery cannot be credited to me. I was being assisted and prompted with heavenly help all along the way.

I have been given the great privilege to have Georgia as a daughter here on earth. Her life and a accompying miracles have touched hundreds of lives already. Whether her mortal mission is brief or very long, I know it was not in vain. Heavenly Father cares for her and has a plan for her as well. So blessed to care for this sweet daughter of God on her earthly mission.

Before returning home I saw a saying on my friends wall; "there is no foot too small that it cannot leave an imprint on this world".  Praying Georgia leaves many more imprints!

Going public.

Today Georgia had her first public feed. Yes, the terminology again sounds awkward as I say it, but that's still how it comes out. We went to church and I packed up enough for one feed and one dose of one of her meds. I expected her to just need the one feed, but ended up the last 30 minutes of her feed I started at home went into sacrament meeting at church.

I have breastfed three children and was very comfortable feeding them in any setting, except at church.  Maybe that had something to do with the weird feeling I had feeding her in sacrament meeting. I was always jealous of mothers of bottle fed infants that they could just do it right there and not have to leave to the mothers lounge. Ok, another plus ;). The weird thing was I kept having this feeling like, should I be doing this in the mothers lounge?!?!?

Anyway, I got over it and because she's on a schedule of 1 1/2 hours on and 1 1/2 hours off it wasn't long before I had to feed her again. I step out to the foyer to hook her up and soon there is a large crowd of women around me. Some stare from a distance, others stand close asking questions, others stand closer offering assistance where and when they can.

In a lot of my support groups and blogs and forums so many moms get worked up about the staring issue, I found I didn't mind it because I've been guilty of it. I think it's natural to be curious about something that is new or different. I have never been exposed to anyone with special needs and honestly when I've seen a mom and special needs child lately I do stare because I'm trying to get a glimpse into what life is like. Maybe next time I'll find the courage to stand closer and ask questions and offer assistance or just an ear.

Overall, feeding Georgia out and about was great. Only thing that worried me was the cord to the tube. Especially when everyone got out of church and the halls were full I was sure someone would become hooked on her cord. Im sure theres a way to prevent this.  Another question for my blog mommas!

Scheduling vs. kids needs.

I've never been a mom that stuck to a schedule with my kids. I was always more of a fan of letting my little ones tell me when they were hungry and tired. Before you knew it between your schedule, the other kids schedules, and the babies needs a good schedule would naturally evolve.

Now a feeding pump, a strict calorie diet, and three daily meds taken several times throughout the day forces me to schedule her like no ones business. I have a schedule written out and alarms that go off so no part of the schedule will be missed,,,not even by a minute!  If this little cutie isn't hungry I force feed her, I have a pump that puts food right in her belly, so I can. How convenient!  

So in the case of needs driven vs scheduling I was absolutely,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,right! Scheduling stinks!  For me anyways ;). Having your baby on a schedule consumes everyone's life in the house. I have now begun scheduling time to spend with my hubby and other kids.  Nope, can't read a book right now, not until 3:00, gotta stick to the schedule!  It sounds crazy, but it's true!!!  One misstep and your schedule is ruined!  Looking forward to more carefree days in the future!!!

Time for a feed....

I have to take a minute to address the awkwardness I feel when talking about feeding my child. Today Georgia is getting released from the hospital and as I'm telling everyone about the conditions for leaving I notice the strangeness of the terminology. "they're going to start her feeds" instead of, "they're going to feed her". "she's moving towards a more bollus feed" instead of, "we're feeding her 3 oz over an hour instead of over 3 hours".  I start to wonder how she will start to feel about the terminology, what will I tell her, "come here, it's time for your feeds". It sounds so weird, I have just become accustomed to how they speak in the hospital. The best part is, is that my kids think its so normal and have adopted the language too. Sawyer thinks he had a feeding tube when he was a baby. That was a fun conversation too because I said, "no Sawyer, you nursed". "what's nursing mom?". Ok, let's just stick with you had a feeding tube as well!

So if Georgia handles her bollus feed well, or in other words, can eat 3 oz in 1 hour were outta this place!  Hopefully no more hospitals or surgery for this little trooper!

Praying for Poop

I should have started this a long time ago, but I didn't, so here is the quick version of my two month olds long story. I had extra fluid through my whole pregnancy and had several ultrasounds. No one could find anything wrong. We went in to have our little girl expecting that we knew the drill since this was the fourth time around.
On the operating table after my c-section I saw fear in my husbands eyes for only the second time in our whole marriage. The first time involves trying to buy purses at the LA fashion district. Funny story. This time, it wasn't so funny. Georgia was born choking on meconium and fluid. After a minute of trying to get her to breath she had an apgar score of 5, at five minutes apgar score of 9. They watch her a bit and bring her to me clean bill of health. A little more excitement than the older three, but all was good.
It wasn't too far into having her back with me that I realized it was not all good. She couldn't seem to coordinate the suck. After a lot of work she managed to suck but the milk started coming right back up and out of her nose. What?!?!?  After the night nurse condensendingly calling me mom all night and saying just suck her out she'll get it, the day shift started. Marlene my delivery nurse was my nurse again and Georgia's angel. She took her back to the nursery and within 5 minutes Georgia stopped breathing and turned blue. Air vac was sent to rush her to a nicu and that leads me to where I am now. Out of nicu for a month, no services or therapies to help Georgia, back in the hospital after second major surgery, and praying for poop.

It all hasn't been bad. Georgia's a sweet, fun baby full of smiles. People have rallied around us to serve and offer friendship. This blog is to record Georgia's journey, trying to navigate through this world with feeding difficulties. I'm sure this won't be the last time I'll be praying for poop and if you've ever loved a tubie kid, you know exactly what I mean!