Lots of people keep asking…How is Ruby?! I don’t know if they asking about surgery or eating. Eating is on my mind. Surgery is so far from my mind right now.

Ruby is still not eating well. Just this one last lingering issue. It is NO fun when you can’t feed your kid. Since the switch to soy, she definitely doesn’t scream through eating. So, I think we figured out the allergy problem. Now, it seems to still be acid reflux. I can get 30-40ML in her still and then she gets very irritated and uncomfortable -arching her back, pushing the bottle out of her mouth. I can’t finish feeding her. So we take breaks. Lots of breaks. 15 minute break and then she eats 10ML more. 15 minute break and she eats 10ML more. And so on and so forth. Not the best way to feed a kid by “snacking” but it is the only way I can get at least SOME food into her.

Of course since she is eating this way, her naps are a problem. She is only napping about 1 hour between feedings -not enough I think. Luckily, she is sleeping long hours at night.

We meet with her pediatrician tomorrow and I’m going to need to get across to him the severity of the situation. I feel like we’ve been stalling for a bit too long since surgery. She’s going to start losing weight with the quantity of food she is eating. We’ve got to get her more comfortable eating.

I’m still pumping strong. Since I stopped for those 12 hours…my supply drastically reduced. With some power pumping the last few days my supply is coming back. I was doing great not eating dairy and then for some RANDOM reason, we ordered pizza one night, I ate 2 pieces and then hit myself over the head. WHAT AM I DOING?! I completely FORGOT. d’oh. I let Ruby nurse once a day and she is still doing great. I have high hopes that if we figure out this acid reflux thing and get my supply strong -we might be able to do this!

YAY! We are 3 weeks out of surgery and look at that scar. Looks amazing!

We have our follow-up appointment with her cardiologist today (Thursday). I am anxious to get a report on her heart and to take her off 2 of the 3 meds she is on.

So glad that heart stuff is in our past. I have found such comfort and peace in connecting with other moms who have heart babies. You remember the OTHER Harris family with a similar story? Well, little Ryder has turned a corner and making her momma proud -eating like a champ!

We are still waiting for Ruby to turn THAT said corner. I didn’t make any posts earlier this week because, well, I just feel like a broken record. We had a rough weekend. We raised her Zantac meds on Thursday and Friday was PERFECT. Then Saturday started 2 days of terror. She screamed and screamed anytime I put the bottle into her mouth. I debated all day whether I should put an NG tube in -you see, the NG tube makes the acid reflux WORSE. I was getting so concerned because she wasn’t eating very much that I tried to put her NG tube in one night and failed.

So, I decided to give her soy again. I had a can from the LAST time we tried this. After a bottle of soy, she was PERFECT for 2 days. It was awesome. Then, I added breastmilk to the mixture (to make it high calorie again) and BAM. She was a wreck for a day and half again. Screaming.

So, I think it boils down to acid reflux AND a milk allergy (my breastmilk and formula), which I guess sometimes go hand in hand when a kid has acid reflux.

Thinking of eliminating dairy out of my diet just to SEE if that is the problem makes me more tired. All that work and who knows if she’ll even nurse in the end. I had a pretty emotional morning today, I stopped pumping. I am tired. It was an emotional decision.

Made me remember binding myself with Everett and made me cry all the more. It was a weird flashback, I wasn’t expecting. Felt sorry for myself that yet AGAIN, I cannot nurse my child the way I dreamed and it is cut short due to other crap. I feel like I have NO control over things that mean a lot to me. It was a sad morning. My breasts aching and I attended a special luncheon in remembrance of my friend’s son who died a year ago…I was a hot mess.

I came home, sad that I would have to throw out all the frozen breastmilk in my freezer. All that hard work. Asked a few people if I was making a good decision. Just needed someone to confirm that it is what it is. My sister talked me out of it.

I ran upstairs and pumped.

Much better.

My sister found a great resource that I’ve read about 3 times now. Trying to gain perspective on Ruby and feeding.

So. I aim to eliminate dairy from my meals. Throw out everything I’ve pumped thus far and start over in a week or 2. It is worth a try.

I know. I’m crazy. I want to nurse my child THAT badly.

My baby girl is now 3 months. Where have the last 12 weeks GONE?!!

It sounds like all Ruby does is scream; she actually has some other talents. She is sleeping through the night! Averaging about 9 hours a night. It is LOVELY.

We started tummy time last week. She’s not loving it but we need to start working on head control, she’s still pretty wobbly.

She is cooing and gurgling when we talk to her and she’ll follow a person with her eyes across the room.

She LOVES bath time when she’s with mom in the big tub. When she’s in the sink, that is still up for debate as to whether or not she likes it.

My sister came up this weekend and threw me a big 30 birthday bash! It was so much fun hanging out with all my friends and just relaxing. We painted pottery and ate fondue. Lovely. The rest of the weekend, you would have found us doing the above. All the ladies. I was able to squeeze in some BIG naps thanks to my sister. LOVE that we live so close to each other now.

On my to do list this week: Research schools for Lindy and start visiting them. Find a new endocrinologist and revamp my diabetes regimen. Wait. It’s already Thursday. Maybe I’ll get to it next week.

Can’t stop thinking about my dear friend Kristen. One year ago today, her sweet son, Gabriel was stillborn.

My heart is heavy for her, just knowing what she is going through. We celebrate his life, even though it was so short. He has changed many lives.

Hugs and love to Kristen, Mike, and little Hannah.

The feeding tube came out because we were able to get her to drink a certain amount from the bottle.
I think I was so happy the tube came out, I just put up with the crying. The crying is wearing me down and I’m left wondering why my child cannot eat.

It.has.been.rough.

I decided to videotape a feeding just for your pleasure. If you tend to have high blood pressure, you probably shouldn’t watch.

She’ll start out just fine for about 30ml and then start to freak out. Once the bottle is done, she is probably still hungry but we just can’t get through anymore. We’ve pretty much both just had it at that point.

She acts like I am feeding her fire.

The in-home nurse came and told me that with acid reflux, kids can feel fine for a bit and then at a certain point, the food starts to come up and irritate them. I guess it just HAS to be acid reflux. The nurse sold me on the idea more so.

She’s been on Zantac now for probably 6 weeks. But she’s only taking it twice a day and I give it to her right before she eats.

Today, I decided to give it to her 15 minutes earlier than when she is ready to eat. Didn’t help. 30 minutes earlier helped a smidge but I was still forcing her to drink half of the bottle and half is ONLY 40ML. You can see how little I’m trying to get into her in the video.

Yup folks. That is us about 8 times a day.

Sometimes I think maybe there is still something wrong with her heart or there is something OTHER than her heart going on. Let’s see. What could it be:

1. Acid reflux
2. Something in the breastmilk
3. Allergic to something in the formula
4. Sucking problem
5. Gas
6. Maybe her chest hurts
7. Just a typical 12 week baby? (does YOURS do this?)

Not that I need anymore sleep at night but what do YOU think?

We meet with the feeding specialists tomorrow at 7:40am. From there we are scheduled for a swallow study at 2:15 where they will do an ultrasound of her throat while she is eating.

God. Are you listening? I hate seeing her in pain. I wish we could just ENJOY this baby now and make her comfortable. I wish you showed that you cared about the big things in my life. It has been a long 12 weeks.

Makes me think about my baby Everett. Wondering if he had all this destined for his first 12 weeks too. Wonder if HE had heart defects or if he would have been in the NICU for 2 weeks. I would be totally ok with that if I had him back.

Yesterday, we went to the feeding clinic and it was a tad bit intimidating, but awesome. We walked into a little room and 5 SPECIALISTS sat down and basically asked me 100 questions all the while watching me feed Ruby. We made it through and Ruby showed them exactly what she does for me at home. I’m kind of glad she didn’t do well or they never would have seen how much she fusses while she eats. One of the occupational therapists tried to feed her as well and couldn’t get her to finish the bottle. She said, “You ARE right, she is very difficult to feed.” That was comforting to know it is not ME. They left the room and came back with their “assessment.” They think that Ruby has had such a rough start in her first 11 weeks, that she just hasn’t had a consistent, easy, eating routine. She just needs practice and time. So, they wrote out a few things for me to do in the next week. We will meet again next week for another assessment.

I am to swaddle her when I feed and they also thought that her acid reflux was causing her to fuss through feedings. I still don’t think she has acid reflux. Nobody has really sold me on that idea. The doctor in the room wanted to take her Zantac meds up and I didn’t agree since my pediatrician wanted to ween her off of them sooner rather than later. So, we agreed to give her one more week. They gave me 48 hours of feeding her by bottle without the NG tube.

Folks, we have gone two WHOLE days without the feeding tube and I think it is safe to say we are officially done with it! YAYAYAYAY!!!! I don’t know what changed; whether it was the feeding tube being taken out or Ruby was just feeling much better post-surgery…but she is eating MUCH better now.

Today, Ruby drank 3 ounces (90ml) in less than 20 minutes. I was completely shocked. She just kept going and going and then it was gone. She is apparently physically feeling better after surgery. They told me she’d turn a corner and I just didn’t believe them -but I do now! It is still not easy feeding her, it takes a lot of work to get in the required amount, but she is doing better and better every feed.

She has been off Tylenol for 2 days now as well. They never told me when to stop giving it to her, but she hasn’t had what I consider “cries of pain” in the last few days, so I stopped the Tylenol. Still, when I think about my breastplate being sawed open…I’d imagine I’d feel sore. I feel sore just thinking about it now.

A friend asked about breastfeeding. In my heart of hearts, I really want to come back to it but I’m not sure if it’ll be the best thing for Ruby. She’s already gone through so much, I don’t want to confuse her anymore after we get the hang of bottle feeding. We’ve tried to nurse a few times this week and she latches but she gets pretty frustrated. All of our cardiologists and doctors say that it is possible, with a lot of hard work. I just don’t know now. I am still pumping every three hours so she can have the breastmilk but eventually, she’s going to need more quantity than I am actually pumping. If we do try, it’ll be a gradual process and probably won’t start to really try it for a few more weeks still. Sad to think I’ve missed out on yet another opportunity to bond with my child in the way I want, but so glad that she is at LEAST eating from a bottle and that NG tube is out. Can’t complain about that.