Next Steps for Ruby

Night and day.

That is the difference in my sweet little girl.

In addition to all the amazing things we talked about in the last few posts, the magic just keeps happening around here.

She walks around the house now singing the “Alphabet Song,” “Twinkle, Twinkle, Little Star,” and “Jesus Loves Me.”

She has heard us talking about her upcoming birthday and is estatic about it. She tells other people happy birthday and pretends to blow out candles.

Ruby is playing with her sister now. Really playing!

She can count to 15 (she usually forgets number nine, but other than that she does great). She can recognize many of her letters and is learning their sounds.

We still have a long way to go. I have been battling a lot emotionally (see previous post) because I didn’t see just how far behind she really was until she started making progress. Maybe my subconscious was blocking me from seeing it because I couldn’t handle it. I don’t really know.

Sinse she was finally able to start counting, I have been working with her to use her fingers to count. Well, in the process I learned that she has zero ability to independently move any of her fingers other than her index finger. She can close her hand and open it. But cannot do anything with her fingers other than point. I will hold her hand with two fingers up. As soon as I move my hand, all her fingers open all the way up. I have worked and worked and worked with her. She cannot do it.

A few weeks ago, Dr Kemp called me to check on her. (Who does that? No other Doctor I know!) I told him what was going on and also wanted to move forward with additional work towards getting her fully functional, healing her food allergies, etc.

He suggested having her do the bird dog stance work with her until she could hold it 30 seconds on each side.

You can image how that turned out. If not, I’ll tell you. TERRIBLE, that’s how!

I called his office back about a week later, and explained to him that it just wasn’t going to happen. He gave me different exercises (some to specifically target her fingers) and then we’ll check her out again after the first of the year.

Two days ago she was watching me while I calculated something to myself. I began counting on my fingers (yes, I do that still. Especially sinse I no longer have teachers that scold me for it). Ruby watched me and began looking at her hands, turning them over and over.

Yesterday I signed “I love you” at her. She held up her hand tried to move her fingers around.

Today, she held up two fingers for the first time! It wasn’t pretty, but she did it!

Another step forward!

Monday is her last appointed with her speech therapist under the Early Steps program. Tuesday she has an evaluation with the school board to see if she qualifies for speech therapy through the school system.

She turns three in 6 days.

What a journey this has been! I’m ready to take the next step!

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The Past Year

It was about this time last year that my journey began. Ruby Sue was six months old and weighed only eight pounds. After a train-wreck of a nursing relationship, she began to refuse the breast. I turned to the internet to find the help that local doctors and Lactation Consultants couldn’t give. I’m very happy to say… that I found it!

I started blogging in an attempt to bleed out some of the pent up anger, sorrow, and fear that had festered beneath the surfface for the past six months. My blog was passed around on Facebook and shared on mom-support groups. Somehow, by the hand of God, it ended up before Jennifer Tow.

That’s when the turn around started. Jennifer contacted me. The information she gave was unorthodox, but felt right. Many friends told me I was crazy to consider paying a woman half way across the world (She lived in Paris at the time), that I didn’t know, to help me heal my baby. I spent much time in prayer and in agony, trying to make the right decision. Unknown to me, this decision would change the rest of my life.

When most everyone told me “no,” I felt the leading of God’s Spirit to hire Jennifer. One of the hardest decisions became the best decision. What many called “a chance,” or “a risk,” I called a “leap of faith.” I hired her.

  • We took Ruby off of the “f-word” (aka formula), and began making my own formula from raw goat milk.
  • Eliminated dairy and gluten
  • I generally began eating healthier

Within 3 months, Ruby gained 5 pounds!

Our lives have forever changed because of Jennifer Tow. I have abandoned the “SAD” (Standard American Diet) in pursuit of health and healing. One year ago, I weighed 174lbs. Today I am 125lbs.

I no longer eat to entertain myself, please myself, or to fill an empty void. I eat to nourish my body. If it is not nourishing, it does not get eaten. No longer am I slave to the carb cycle, the ever-demanding roller coaster of hypo- and hyper-. I understand what hunger feels like, not the sugar crash. There is no sugar crash now- because my diet is no longer based on the consumption of sugar.

It is liberating! Many pity me because I “cannot” eat like them. Yet I pity them for being bound to a way of life where they feel obligated to eat unhealthy food  out of fear of being unpolite or unusual.

I feel more alive than ever before! Colors of more vibrate. Sounds are more crsip. Feelings are more intense. Clarity of mind. Temperance. This may sound strange, but I feel closer to God. More able to sense Him, hear His voice. I see things more logically, less emotionally. I have an easier time with my toddler. I don’t become as angry as before. Whenever there is a meltdown (if you have a toddler, you know what I’m talking about), I am able to calmly remove her from the situation and loveingly correct her. She listens and respects me now.

Whilst mentioning the progress, I would be remise not to acknowledge the road that still lies ahead. Ruby continues to battle flare-ups of eczema. It would be really nice if she would gain some more weight. There is still much to be learned. More gut healing for all of us. But we are on the right course. There are slip ups, times I cheat (like my step-mom’s DIVINE cheese cake she made today), and points of ignorance. But I’m thankful for the journey. Not nursing Ruby Sue was one of the most difficult things I have ever suffered in my life. But it has turned out for the better! Now I’m glad it all happened. The experience, what I have learned, and how I have changed has become part of who I am. God’s word was true when he said, “All things work together for good to them that love God, to those who are the called according to his purpose.” Romans 8:28

 

Early Steps Screening and Good News

Sinse we have become much more aggressive in eliminating corn, we have already seen improvement in Ruby! On Saturday, she started playing with my face and noticed my eyes. She has never done that before! She started clapping toys together. My mother-in-law bought her a soft baby doll and Ruby has pretend played with it quite a bit. Definite improvement!

Today at Early Steps, we had her screening. She passed in every area except communication. They will call me to schedule the full diagnostic. From there, most likely they will send someone out to the house once a week to do activities with her to get her caught up.

I asked the Doctor specifically about autism. She said that the reason my doctor suggested Autism was because Ruby couldn’t identify body parts or point. That is a tell tale sign. But the doctor did not believe Ruby to have autism because she did so well in several other areas. This is great news and I am breathing a heavy sigh of relief.

Ruby Turned One!

I can’t believe it’s been a year already. But then again, I can! It has been a long, hard year. Talk about a paradigm shift! A worldview shattering! Wow, what a year!

I always believed that there wasn’t a reason a baby couldn’t nurse. Babies were born to nurse! Or so I was taught. Now, I certainly know better! Tongue Tie, misaligned jaw, cleft palate. Those are the ones I know of. But I’m sure there are probably more reasons why a baby can’t nurse.

I have learned and grown a great deal this year. I have come upon the largest challenge that life has ever handed me. And I still haven’t backed down! Not by might, nor by power, but only by God’s Spirit have I been able to keep on.

I have also learned about the importance of taking care of myself and my family. Mainly, in reference to diet. I have changed and am still changing our eating habits. I have learned that tongue ties, among many other things, are caused by a folate deficiency. Folate is found in eggs, liver (yuck! Haven’t tried learning to like this one yet), green leafy vegetables, and other things. Basically things that my diet previously wasn’t full of. It is now! I still have a long way to go to be where I want to be. But I’ve come a long way! Thank God! I’m thinking about including the diet changes in this blog. Is that something y’all would enjoy learning about and following me through? Let me know in the comments.

Anyway, Ruby turned one a few days ago. She is such a big girl. She’s walking now. Eating foods. Playing. Growing up. We had her party a week early because my in-laws were in town then. More pictures and videos are coming. But here’s a sneak peak.

The Last Weight Check!

This morning Ruby had a doctor appointment, another biweekly weight check-up. Instead of just being “cautiously optimistic” like last time, Dr Miles is very pleased with her progress.

Ruby was 10 lb 6.5 oz and 23 inches long.

Ruby’s height has always followed the growth curve but was just barely below. Dr Miles plans to use this as a model for Ruby to have her own growth curve for weight and head circumfirance also. Based on her current progress, Ruby will be caught up to her growth curve when she turns 9 months old.

Dr Miles no longer feels the need to see Ruby biweekly. She wants to see her in a month, to make sure we are still on the right track. Then again for her regular 9 month check up. If Ruby has reached her growth curve in weight by that point, then we will FINALLY be done with all the weight checks. She will be a normal check up schedule at that point.

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A Small Ray of Hope

I talked to my Lactaction Consultant and it sounds like we may have a bit of hope!

First off, I want brag about how awesome and knowledgable she is! Wow! She pretty much diagnosed her tongue tie over the phone with me. She told me about hops tea to help with letdowns and shatavari to help increase supply. She has been great. She has spent much time on the phone with me and has been there for me emotionally also. I’m a very grateful to her for that! So, if you happen to be in North East Florida and need help breastfeeding, please contact her! Kristen Gartner at Coastal Lactation Consultants.

So here’s a little backstory. After Ruby had her tongue clipped she nursed a lot better but still wasn’t where she should be. We thought that using a nipple shield was part of the problem so I met with Kristen to see what we could do. Ruby was not interested in nursing without it. So we decided to try clipping the nipple shield down little by little until she was fully on the breast. I suggested it because I heard it had worked for a friend. Well, what I didn’t know is that it can be very painful for the baby to nurse on a clipped nipple shield because the edges are sharp. After only 36 hours Ruby developed a blister in the center of her tongue. So we went back to a full nipple shield.

After seeing Beckman for the first time, Ruby immediately began nursing better. See gained 4 ounces in 5 days. Which is HUGE for her. We were excited! Then she all of sudden stopped making progress. She would try to nurse but wouldn’t get much milk. Then she started coming off the breast after a just a few minutes. Then she lost weight. I noticed her tongue was red and raw again. Then I discovered that one of the nipple shields had a crack in the tip of it. Well, in the mean time I had to give her a bottle because we can’t afford for her to continue to loose weight. I gave the bottle because Beckman said that if I lay her on her side that it wouldn’t cause nipple confusion. Otherwise I would have tried to feed her with a syringe. I got a new nipple shield and she went back to the breast. Everything was fine. She started nursing super well and gained weight.

Then last Saturday, for no apparant reason she woke up and just flat out refused the breast. I have no idea why. She hadn’t even had a bottle in over 36 hours. So this still doesn’t make sense to me. I thought it might be teething so I got some good teething medicine that worked well with Loretta. Still no luck.

And that’s how we ended up where we are now. The way she will nurses when she does decide to is similar to the way she was acting when the nipple shield was cut and cracked. I’ve examined the nipple shield coutless times and there is nothing wrong with the one I’m using. So I’m guessing that maybe she is just associating the nipple shield with causing her pain.

Kristen told me something encouraging yesterday. She said that she knows someone in Texas that has a large supply of German nipple shields. These shields are cherry shaped instead of cone shaped. The bottle I give Ruby (BreastFlow by The First Years) is shaped the same way. She said that the lady only sells them to other lactation consultants. She is ordering them for me. We plan to get together early next week after they arrive to see if it may work.

I’m STILL a Breastfeeding Mama

So here’s where we are now:

I had a follow up appointment with Debra Beckman yesterday. Ruby’s oral motor skills have made a lot of improvement. But we still have some progress that needs to be made in order for her to nurse effectively at the breast. She said the number one thing that will help her is to gain weight. The best way to do that is via the bottle. Especially since now she wont take the breast. If I’m lucky she will nurse maybe 5 minutes at most.

Side note: this really ticks me off. She told me that I gave her the bottle while she was laying on her side it would not cause nipple confusion so I shouldn’t worry about it. I gave her the bottle that way and *surprise* she magically won’t nurse now. Then when I talk to her about it she tells me, “oh, well, I’m not surprised. That tends to happen because it takes so much effort to nurse vs the bottle.” So, I like Debra Beckman. I need her expertees… but I feel lied to and betrayed. Because my viewpoint is that if I had kept her at the breast she would have stayed there. Her weight gain would have been more gradual but she would eventually get the strength to nurse properly b/c I’m doing the exercises she gave me. Problem would have been solved. *sigh*. I asked her about the chances of her going back to the breast and she “couldn’t guarantee anything.”

I feel like crying just writing this. But that’s why I’m writing this… as an outlet. I could have just used the Supplemental Nursing System (SNS) if I had known then what I know now.

So I’m offering the breast first. Sometimes she takes it sometimes she doesn’t. I nurse her what I can and then give her the stupid bottle. If I’m able to pump enough BM then I give her that. If not, It’s the “f”-word (Formula for those of you who couldn’t figure that out).

*shudder*

*shudder again*

I feel like the hyena from The Lion King who shudders at the mention of “Mufasa” and then asks them to say it again.

*shudder*

So now that you know the situation… I can start writing about how I’m feeling and what I’m thinking about all this. So I was getting ready to leave for ANOTHER doctor appointment and had to pack bottles and some of the f-word. I was measuring out the f-word into the little container things that it’s pre-measured into that you just pop the little lid off the snout and pour it into the bottle (this is why I still consider myself a breast feeding mom….. I don’t even know what the stupid thing is called.) While I was doing this I was thinking “I never would have ever thought I would have EVER had to do this. I’m a breast feeding mom and now I’m a formula feeding mom.” And my heart sank. And the throat lump arose.

Let me tell you something, Similac… I may have to give my baby this god-awful stuff that you think is so great… but I’m STILL a breast feeding mama!!!! I breast feed what I can. I pump what I can. And because I love my baby so much that I’m willing to sacrifice anything for her, I’m giving her the f-word… for now! But I have Cowden blood that flows through my veins and I WILL find a way to nurse Ruby Sue.

If you see me at a restaurant you will probably see me give my baby a bottle. But at church you probably wont. At the mall you probably wont. I plan to find somewhere to try to nurse her first and then give her the bottle. Not because I’m ashamed and don’t want people to see me give a bottle. But because I’m not a formula feeding mom. I’m a breastfeeding mom. And that’s how breastfeeding moms nurse!
I catch myself saying things like “Ruby is nursing the bottle.” I used to correct myself. But I’m not anymore. I will pretend that she is nursing on me even if she is actually eating via bottle.

Why?

Because I’m STILL a breastfeeding mama!!!

Introduction and Backstory

My name is Samantha and I’m a struggling nursing mother. I’ve never blogged before. I’ve never even been a “blog-reader” type of person. I’ve just been through quite an interesting journey. One of the specialists I took Ruby to see suggested this. So, just a heads up: I have no idea what I’m doing. I’m blogging to have an outlet for what I’m going through and also thinking and hoping it might help someone else.

Anyway, I hope this can help someone else and maybe even offer entertainment to others. I have very strong opinions about things that I will probably be sharing. You may disagree with me and that’s ok. But I’m still entitled to have my own opinion, as are you. If I offend anyone on here, please know it’s not intentional and that I am writing primarily for an outlet. So, I hope you enjoy!

Backstory:
I nursed my DD#1, Loretta, just fine. We had a rocky start, but a nipple shield and a few weeks worth of endurance, we went on have an awesome nursing relationship. i intended to tandem nurse when I found out I was pregnant with DD#2, Ruby, but my milk druid up completely at four months pregnant and Loretta lost interest.
Because I did so much reading, researching, and went through a decent amount of trouble to nurse Loretta, I FOOLISHLY thought nursing Ruby would be a breeze. YEAH, RIGHT!!!!

So after a speedy and somewhat pleasant labor and birth at Fruitfulvine Midwifery Service’s Birth Center (only freak Bradley students like me would describe the birth process as pleasant), I gave birth to Little Miss Ruby Sue. Five pounds, 2 ounces. So we are already behind the power curve on size and weight here.
So today, Ruby is six months, 4 days old and only weighs eight pounds. Yes, you read that right…. eight lousy, stinkin’ pounds. So for the hours, and hours, and HOURS I have spent nursing her… For the weeks, and weeks, and WEEKS Ive stayed cooped up inside my house with a two year old… For the days, and days, and DAYS that the house is hideously unkept and the laundry not washed or folded… For the nights, and nights, AND NIGHTS I’ve not slept for more than 2 hours are a time… I have a six month old baby girl who only weighs 8 pounds. Eight pounds. 1 2 3 4 5 6 7 8… 8 pounds… EIGHT. E.I.G.H.T. POUNDS!!!!!

Oh the ridicule I’ve endured. The jokes I’ve been the brunt of. The opinions I’ve listened to. The flat out harassment. I’ve even had lunatic people follow me around Dillards bugging me about her weight! FOLLOW ME AROUND DILLARDS!!! The worst part of that particular story… she was an employee!
And the comments  people make and questions people ask… “AWWWW….. what a cute baby. Shes holding her head up so well. How many DAYS old is she?” Me: “Well, she’s actually 6 months old now. There’s approximately 30 days in a month. 6 x 30 = 180. She’s 180 days old, Thank you.” Do they take the hint? NO! THEY KEEP ON!!! “ohh….. what’s wrong with her?” Seriously? You’re a complete stranger, why do you care and do you really think I’m going to tell you the complete medical background of my daughter while we stand in line for the bathroom? and even if I did, DO YOU REALLY WANT TO STAND THERE AND LISTEN TO ME GRIPE FOR 20 MINUTES?!?!?!?!

*gets off soap box. Smooths out hair. Straightens cloths and gently clears throat*

Nursing Ruby has been an adventure to say the least. And it’s not over yet. As a result of a posterior tongue tie that went undiagnosed until she was 2 months old, she has improper oral motor skills and weak muscle tone in her mouth. After circumstances alined in nothing short of a miracle she was able to have a franeoplasty under general anesthesia to have it clipped when she was a little older than three months. But going so long without being able to move her tongue properly, she lost the skills and muscle tone she was born with. unfortunately we JUST found that out.

From time to time I may post stories about past experiences. I’ll head those “Flashback.” I also will put information up that I hope will be helpful to other nursing moms.