The next 72 hours

First of all, Noah has the BEST home nurse, Michele. She's so receptive to me, Noah, and really proactive with Noah's treatment-- not to mention super-knowledgeable and SWEET! After talking with Dr. Baumeister (Noah's regular pediatrician), she wants work aggressively to get Noah off of his NG (feeding) tube. I was thinking, I thought we already were... haha... but it's the intent, right?

We have taken out (and left out) Noah's tube on two different occasions to see how he'd do eating exclusively orally. Both times flopped on their faces for different reasons, but perhaps mainly only because we didn't try for long enough. Sooo... today we are making a commitment to leave Noah's tube out for 5 days and only give him food through the bottle! The nurse said we can expect the next 72 hours to be BRUTAL (grrrreat, super excited for this!), but after that there is no reason that Noah shouldn't be able to regulate himself and eat. I am so excited, but I am on my knees begging you for prayer for these next few days, and begging the Lord for patience! I know Noah will probably be fussy and frustrated, and I just pray that he doesn't get so hungry that he's too exhausted to eat.

It's going to be a long weekend, plus I am headed back to Starbucks on Saturday. I'm going to continue to work 1 day a week so we can keep up our medical benefits and not go on COBRA until July 1. I know it will be nice to be out among adults, but I also know my family needs me at home now more than ever. Between Kyle and my mom I know the kids will be in good hands, and I will only be working 4 hour shifts so I won't have to worry about pumping and just being away for too long. I think it will be a good thing. We'll see!

On a side note, if you feel so led, please pray for the following families and their babies! Kyle's cousin Mike & Lisa (due with their first on April 23rd), my sister and her husband Steve (due with their first baby girl, Chloe, on April 23rd also!), My good friend Reebs and her husband Nick, due with TWINS on April 12th, but could pop any day, and baby Stellan (whose family I have never actually met, but have gotten to know through the blog community-- I know I'm crazy...) but her baby boy Stellan is in the NICU with heart problems and is in critical condition. Their blog is www.mycharmingkids.net if you want to read Stellan's story.

Two steps forward, one step back

The past few weeks have been a little discouraging. Noah hasn't progressed much on his oral feedings. At one point he pulled out his tube so rather than putting it back down I gave him a bottle without it in, and he drank 90 mL! It was SO awesome having him tube-free for a day, but still stressful knowing he wasn't getting as much food as he needed. However... since then he's been getting HORRIBLY constipated and won't eat until he poops. So he's only been taking 20-40mL on the bottle per feeding. Ah!

We are (finally) connecting with OT here in town next week, so I'm really anxious for that to see what we can be trying different. The fact that he ate 90 at one point is encouraging though-- I'm just curious to know why he can't (or won't) do it anymore.

He's smiling more and more though; he always smiles for my sister-- what the heck! We also had his routine well-child 2 mo. appointment yesterday, and his "percentages" are as follows: height = 76th percentile, weight = 62nd percentile, and his head is only in the 16th percentile! Haha, he has a "narrow" head like his daddy... we were cracking up at the doc's office.

Other than his feeding everything else is going awesome! We're anxiously waiting for his next appointment with Dr. Perkins at Children's which is on April 1st, where they'll re-evaluate and decide our next steps (if any). His hygroma hasn't grown any, but it isn't shrinking either, with the exception of the swelling around his eye, which has gone way down praise God!



Me in my "mom of 2" look! This is becoming all too common now... :) I'll try to get a smiling picture this week. Thanks for checking in!

The bottle!

I am ecstatic to report that last Thursday Noah had his first bottle!! He only did the 20 mL (the amount we were doing with the binky training)... but the next day I put 30 mL in his bottle thinking it would reduce the amount of air he took in, and he drank the WHOLE THING! Yesterday I did the same thing with 40... he didn't blink and drank the whole thing.

Here & there he'll only take 20 or 25, but it seems like it's when he's just not hungry (duh). I am so proud of him, I was in tears... we still have a ways to go (his total feed is 110 mL at this point), but I will take any miracle I can get!

This is totally an answer to prayer; it is so crazy that as God teaches me to give more of myself to Him and just trust Him more with all the little (be them unimportant or important) things in my life, how much freedom and peace I feel. My natural reaction in this stress is to worry and constantly think, "what can I do... what am I doing wrong...etc?"

But I'm reminded, "Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. "