PH/acid reflux test = More Brave Beckett

Say a prayer for my little buddy tonight. This procedure was no fun for mom or Beckett. Poor guy. They placed it too far into his stomach at first. I am just thankful they didn't have to place it again, just pull it out some. He has a tube/wire down his nose to his esophagus to test the pH levels to see if the stomach/gastric juices are coming up into his esophagus. We are going to see if reflux (and the pain associated with it) is why he stops eating at around 1 to 3 ounces.

So hard. He has been eating "calmer," but the volumes haven't changed much. I still don't know how he is gaining weight. I guess we are checking off our list of what to rule out, starting with this test.

Please pray for Beckett to tolerate the wires and the "no-no" arms. He actually has already rolled over to his tummy even with them on. He is not going to let those "no-no" arms slow him down! It's amazing how quickly kids adjust. Seriously. What a rock star! He can bat at those toys, and they go far! After we got over the crying and trauma, I did get some smiles out of him. Poor guy just would lift his arms up, and stare back and forth wondering what in the world those were. And of course, Ben is such a good daddy. He may or may not have rigged the play mat to have a toy dangle down just in the right spot for him to get it with just his mouth. :) 

Please pray also for discernment for Ben and I. We obviously want to find out answers, but also do not want to put Beckett through procedures that may be unnecessary. It is so hard to know what to do! We are thinking about putting off the swallow study until after we get back from our trip to Iowa. Just been a lot. Today's been a lot.


Back to feeding therapy tomorrow/OT. 

Oh, and today we went to Dr. Hanson for a weight check, and he was 15 lbs. 5 oz., 45 cm head circumference, 27 1/2

Still gaining!

Beckett weighed 15 lbs. 5 oz. Doc again validated that he just might be a low volume intake kiddo. He is still gaining. So hard to chill out about intake, but am going to cling to the fact he is still gaining! And his growth curve looks good. So doesn't make sense to me, but well, guess Beckett has never proved to be a textbook kiddo. Now we get to go back to opthalmology because he has one crossed eye of concern. Good news though: he did breastfeed when I thought that ship had sailed. This kid is sure keeping my mom skills sharp!

Our journey back to liking bottles again...

Update on Beckett's eating: (I clearly need to get back out the sticker chart to help focus on the positives!) Since meeting with GI and feeding therapy on Thurs and Fri, Beckett has not refused any bottles! His volumes are still less than stellar, but Ben and I have had to change our perspective and expectations. Celebrating any of the volume he is taking! Praise he has been more "calm" during his feeds. Weight check tomorrow morning, and pH/acidity probe placed tomorrow at 1pm. Praise my Sweet Beckett is still full of joy and smiles!

Will definitely post more specifics when I have more energy. The rough days just take the life right out of me, and I end up needing a few days to recover!!

We are hopeful this week will be a better week to liking our bottles again!

New New Plan

Finally home from GI. We are exhausted. Have a new plan. Definitely has reflux, doing pH study on Monday. To test its severity (but we have to stop all meds for three days prior), holding on endoscopy for now. Feeding therapy consult/eval (which we already have scheduled for 10 am tomorrow...and is the same therapists we saw a couple months ago with OT) because he already have some oral aversion. :( Swallow study with speech therapist to be scheduled. Can stop feeding every 2 hours (Praise Jesus!), and go to feeding every 3 hours during the day, 4 hours at night, faster flow bottle nipple to try and get more in him. Baby food two times a day. But FRIENDS...he miraculously gained weight, and didn't lose! I am certain this is a gift from above. Thank you Lord. We still need to watch for hydration, but need to also wait and see if these meds will help (after restarting on Tuesday). We are relieved we have a new plan to at least try. We still love our Beckett dearly, and are going to TRY and stress out less. We are still so thankful for medical professionals who will answer our long list of questions! ;) Actually, Ben and I are to the point where everything is funny we are so tired. :) thanks for praying! Pray for some amazing rest for all of us tonight!

Beckett aka Endo Man

Well, finally connected with the GI nurse after phone tag. Beckett gets to start a new reflux med, Nexium. So we shall see...

I thought that was it, but nope.

They also want to do a couple procedures. An endoscopy (which he will have to be put under for), biopsies, and a reflux study (the probe will be placed when he is under), and then we take him home, feed as normal, and push a button on his computer when he starts his fussy post 2 oz. ways. We will do this for 24 hours, and return the pH data filled computer. We should hear results from the endoscopy right after the procedure.

Mixed emotions about this one. I mean, I want a new plan. I want some answers. But I don't want something to be wrong.

Please pray for:
1. A fast scheduled scope. The scheduler is supposed to call by Thurs. And of course, mama bear wants it done as soon as possible. :) Plus, we are heading to Iowa next week!
2. For the Nexium to give him some immediate relief. Poor Beckett.
3. For whatever they find to be an easy fix.

Thanks friends and fam!
Mandy

New Plan

Deep breath. I have so much to be thankful for. I know this. I am so thankful. But I am so frustrated. I was frustrated. I am willing myself not to be consumed with frustration.

But it is hard.

My sweet Beckett weighed 14 lbs. 15.5 oz yesterday at his OT appointment. Two weeks ago, at his OT appt May 31, he weighed 14 lbs. 12.2 oz. That means he has only gained 3 oz. In two weeks. Not good. Not quite enough.

I just got off the phone with the GI nutritionist. Not quite enough she said. She wonders if it is some sort of virus that has made his eating tank from his "normal" feeding every feeding being around 2.5 oz. Down to a 1.5 oz. Not good B man. Not good. Apparently there is a virus going around that is sinus related, but no other symptoms. Hmm...interesting.

So she says "let's wait one more week."

Not what I wanted to hear. Let's see if his eating takes off this week? I pretty much hope that every feeding this is going to be the break thru feeding, and no. Disappointment. We have now had to change our celebratory goal to "Hey, we are almost to 20 oz today (meaning in a 24 hour period.) Last Friday he only ate 13 oz. All day. Not good. I honestly don't know how he is still gaining. God performing yet another miracle, pretty sure. Must be the 27 calorie cheesecake I am trying to feed him every two hours.

But one more week? Seriously? What ELSE can we try? I have mixed breastmilk in with the green beans, I let him eat, then I give him a sip. I may or may not have thought about syringing milk like his medicine. Ben said we needed to saturate a burp rag or blanket in breastmilk. He loves to chew on that.

So I also am losing faith in the reflux med, Axid. I called to talk with the nurse to get an opinion on changing meds, but we played phone tag all day...so I guess we will connect on Monday. He has been on it since May 25, and ok...so it takes 14 days to really work...ok, fine, but we are past it, and this past week his intake has tanked.

And Beckett is stubborn smart. I know when he eats, he will just stop when it eats. Most reflux kiddos probably spit up. Not B man, he just locks the lips, bats the bottle. No more.

So back to the new plan, since I was begging the nutritionist for a new plan. She said we may need to add oil to the milk. I freaked, and asked if we were really to that point yet. She say we may be. But then said, lets wait a week, and come see me next Thurs/Fri so I can talk to you in person, and get a weight check there. I asked again if we needed to keep feeding every two hours. Yep. I asked if we needed to feed from 5 am to midnight EVERY TWO hours. Yep. She said until he can show us he can gain weight.

New plan: feed rice ceral in morning with breastmilk, green beans for lunch and dinner with breastmilk, still TRYING to get 20 oz. Daily intake of fortified 27 calorie breastmilk, still every TWO hours from 5 am until midnight. Watch for dehydration signs.

Beckett, I love you SO much. But I am so tired. I am frustrated. But mama and daddy are going to try harder. Ok, buddy?

So yes, we are technically out of RSV isolation, but with feeding every 2 hours, and trying to get pumping in 3-4 times a day...we aren't getting out much.

Please pray for my thoughts. I have just been consumed with Frustrated Francis feelings. Poor me feelings. I am processing feeling jipped in my pregnancies, jipped that I am still having to feed my 8 month/5 month old every two hours. I think I am processing, but it has not been positive. I don't like it.

Clearly another humbling time to remind me that it's not about me. I am trying to control the numbers. I am the one feeding Beckett all day long, so the guilt creeps in.

Please pray that Jesus would give me some peace, some amazing rest, and to let GO of trying to control. Pray that Jesus would shield my mind from feelings of mommy guilt. Help me to believe people when they say not to worry.

This preemie journey continues to be hard.

Bedtime Stories

Ellie was going to bed last night (she does that pretty much every night). When we brush her teeth we always sing the ABC song so we know how long to keep brushing. But last I night I kept singing "The Colors of the Rainbow ..." song from the Signing Time DVDs. I finally stopped myself and said "Gosh Ellie, I have got that song stuck in my head tonight."

She looked at me like I was strange (no, I mean even stranger than I really am) and said "What?"

"I have that song stuck in my head."

She tousled my hair a few times and said "No you don't. That's just your hair in there."

She definitely keeps us laughing.

After she climbed in bed she asked me if I would sing "the cradle one" instead of the usual "Jesus Loves Me" and "Silent Night". (Yes that's right, I proudly sing Silent Night all year long ... Mandy thinks it's weird, but back when I started singing to her before bed those were the only two songs I could think of that I knew all the words to.)

Well I could think of the tune, but I could not think of how the words started. So I started humming the tune in hopes that it would jog my memory. Before I could come up with "Rock a bye baby" she very politely suggested "Um, how 'bout with your mouth?"

Post by Daddy Ben

But Mommy Mandy just had to add this picture that Daddy Ben took...isn't her hair awesome?

Green Beans!

So I just got off the phone with the GI Nutritionist, and caught her up on B man and his last two weeks. We are going to wait it out a little longer to really give the reflux meds time to kick in...apparently most affective after 14 days, which is today! We want him to know that it doesn't have to hurt when he eats.
Still need to feed every two hours, and try to get him to take 20 oz/day just for hydration. Now, we are going to see if maybe trying a solid food helps the motivation. We know he eats the neocate nutra  (which is a "medical food" that thickens kind of like forumla powder/cereal in one, more dense and higher calorie) from the spoon. And it is great news that he will eat orally off the spoon! So she said try green beans, and add the neocate nutra to that, and I added some breastmilk too to make it a little less thick.

And by golly. This little dude gobbled those GREEN BEANS right up! Two and a half tablespoons. So now, I am going to have to plot how I can get him to take a swig of milk inbetween beans. :) I bet I could get another ounce in him!
So, some kiddos get solids because they max out on milk consumption. Apparently not Beckett. Tamara said some kiddos are solid lovers vs liquid lovers.
So still main task is to get him to take 20 oz. milk, and try and figure out how I can get him to sleep inbetween! I feel like I am creating an insomniac waking to feed every 2 hours!
Weight check with doc in 3 weeks (which Dr. Hanson actually called Tamara too! Which I so appreciate), and she said if Beckett doesn't gain weight than we will need to be more agressive with calories, and add fat to his diet.
So hopeful that meds will work and create a more positive eating experience!
As far as PT today, Beckett did great! He actually rolled for the first time from TUMMY TO BACK. Haven't gotten him to do it again, but hey, now we know he CAN!

Frustrated Francis

Better start with some positives to counteract my Frustrated Francis (FF) feelings this morning.

OK. Positives.

1. Beckett LOVES to roll over to his tummy. Still only suave to his right side. (Ahh. FF alert) We are trying to overcompensate helping him by supporting his hips to roll to his left. He does tolerate his tummy for long periods of time, and can hold his head up really well. He has done really well with extending his arms out to play with toys in front of him, lifting up his arms off the ground. He also has started pivoting to reach toys to his side. YAY!
2. He is doing so well with supporting sitting. We are working on the propping (kind of like a tripod) which is the next step to his way to sitting up by himself freedom. He is learning that his weight shifts as he leans, but does try and correct himself. Oh, that balance thing. It's tough!
3. He is starting to pull his legs up under his torso while he is on his tummy. Hopefully this will help him roll from his tummy to his back, which he hasn't done yet. (Ahh. FF alert) I meant he does roll from tummy to his back when mama helps his arm not get trapped, and bends one knee under him to provide a more graceful rolling experience. He does get pretty frustrated when he is stuck on his tummy. Like right now. Be right back. He needs to simmer down with his play...he's going to be super tired for his Physical Therapy appointment at 11:30 today!
4. At the doctor yesterday, his lungs sounded great. So I think we hopefully are officially over cold #1, and he did GREAT! Wahoo! No fever, no croup, no labored breathing, just a fair amount of bulb syringing. Sad story though...found out that a case of RSV was at church in Ellie's class. Seriously...RSV in JUNE? Frustrating.

OK. Frustrations.

1. Beckett's eating continues to be frustrating. It really depends on the day whether I choose to let it really bother me or not. Today, it's bothering me. So Beckett's weight check yesterday at the doctor was less than stellar. Did NOT gain much at all! :( He is at 14 lbs. 13.5 oz. now, and I need to cling to the fact that he DID NOT LOSE WEIGHT. But seriously Beckett. So still feeding every two hours (I let him sleep from midnight to 5:30ish), but getting REALLY frustrated as he has only eaten 1.5 oz, 2 oz, and now 1 oz, at his 9 am already today! This past week, and occasionally, I try and stretch it to every three hours. However, he doesn't eat any more volume than every 2. Not cool B man. When is he going to figure out that eating is the cool thing to do? He is doing so well developmentally which is great, but all that activity burns calories!
2.  Looks like I'll put a call into the GI nutritionist to see what her thoughts are. I am supposed to check in with her after two weeks anyways. I do think the meds are helping him be less agitated when he eats, but the volumes still aren't increasing. I am not supposed to be obsessing supposed to look more at the "weeks" volume and then average it out. Struggling with this one. Big 'ol Frustrated Francis (FF) alert.
3. Back for another weight check actually at his 9 month appointment on June 25. Seriously. 9 months old? Whoa. And on June 6, he turned "5 months adjusted age." Wahoo!
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11. And now I'm frustrated as to why I can't figure out how to get the auto numbering to stop. Will post PICTURES later I guess. :)
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13. Have a great Frustrated Francis Free Day Friends.
    

Do you see what I see?

Ophthalmology Report: Preemie #1 (Ellie) was discharged from Dr. Packwood's care! No ROP! Far sighted, but not too bad. Ellie had a hard time understanding why those drops made her eyes fuzzy. Preemie #2 (Beckett) has different size pupils (BUT not greater than 2 mm, so we are good!) and has a pigment scar on his iris (like a freckle on the eye) that isn't concerning either. So far, no ROP indications. Far sighted, but not too bad. Back in a year. Praising God for protecting their eyes.