Monday, August 27, 2012

Yes MAM!

Oh friends.

I think I have spent the last week and a half accumulating ten thousand gray hairs and losing giant clumps of brown ones.

Parker has been an absolute dream baby.  He is happy.  He is smiley.  He sleeps 12 hours a night.  He adores Jeremiah, and they play so sweetly.

HOWEVER, he flat. out. refuses. to eat.  When we left the hospital, he was taking about 50-ish ccs  of his 120cc feeds every 3 hours.  The rest got dumped in his NG tube and was fed at gravity speed (through an 8 french sized tube, it usually took about 20 minutes or so).  Our instructions were to continue as we had been-- offer the bottle for 20 minutes, then tube the rest.  Every 3 hours.  Round the clock.

We real quick decided that overnight feeds would be tube feeds only.  Some babies will eat while they are asleep or drowsy, but not the P-nut.  When he sleeps, he is comatose.  And so it began.

The first 5 days sucked.  There's just not two ways to say it.  Getting up with a baby during the night is never fun, but with Jeremiah it was a simple matter of a quick snack and he was good to go.  In Parker's case, Mike and I were getting up every 3 hours to dump his fortified formula into his tube.  We then had to stand there, wait for it to go down enough in the tube, and fill it up again.  Repeat until entire feed was done.  We were looking at a 35-40 minute process at midnight, 3 am, 6 am, and then when we all woke up at 9 am.

On top of being completely exhausted from lack of sleep, Parker did not make the eating portion any easier.  We had been using the Playtex Drop-In bottles in the hospital, 'cause that's what we used with Jeremiah and were planning on recycling with Parker. He did fine on them-- no problems at all with latching or sucking and very little spitting up.  THE VERY BLEEDING SECOND we walked out of Egleston, he went into full on bottle rebellion.  Would not, WOULD NOT, take a lick from a bottle.  We switched formula.  We switched nipple flows. Nothing.

We had an appointment with the GI doc on Monday, and it was revealed that in the 5 days since our hospital discharge, Parker had gained twice the expected amount of weight.  He's 90th percentile and rocking some very nice fat rolls.  He's been stuffed full as a tick every day of his life, and he's never had a chance to understand what hunger is.  The first doc we saw stated the obvious-- start spacing out his feeds.  Then, a second doc came in and recommended that we not do anything until a swallow study and Ph probe have been completed to rule out "silent reflux" (never mind that he's already on a pretty hefty dose of Prevacid twice a day). Those appointments were scheduled for three weeks out.  Not do anything for THREE WEEKS?  I think not.

We went to our pediatrician the next day, and she agreed with what the GI doctors had initially said-- start spacing out his feeds and see if he gets hungry.  If he pukes, stop. I liked her plan better, so that's what we started doing.

Zero improvement.  "Hungry" Parker was no different than regular Parker.  Desperation was setting in, as I have a very healthy fear of tube dependency.  While we were in the hospital, I was so focused on getting the heck out of there that I didn't do a good enough job of asking Penny, our faboosh speech pathologist, what to do once I got home. She did set up an appointment for us with an outpatient speech therapist.  That was going to be Thursday.

Tuesday night was a huge milestone-- out of the clear blue sky, Parker took his entire 120 cc feed from a bottle.  What sort of sorcery did that entail?  BEHOLD!!!!!!!
The MAM bottle.

Parker had been using MAM pacifiers since we came home from the hospital-- again, that's what Jeremiah used, so that's what I bought for Parker.  He liked them much better than the hospital ones.  As I was frantically digging through our supply of randomly accumulated bottles and sippy cups, I found one of these.  I had been given this bottle by my dear friend Abby at a shower for Jeremiah.  She swore by them for her kiddos.  "Well, self, why the heck not?  He likes the binkies, maybe he'll like the bottles."

And he did, apparently.  His oral intake went from 0 ccs Friday-Monday to 150 on Tuesday alone.  MIRACLES!  We had turned the corner!  Shout to the Lord!

Except not.
There was some improvement, but not alot.  We went to the speech appointment Thursday, which I will go ahead and call the most gigantic waste of time I have experienced.  She tried, God bless her, she really did.  She tried to watch Parker suck and swallow, but he refused.  She tried to scrounge up some advice that we hadn't already been given, but basically acknowledged that he was just stubborn and that our only course of action was the one we were currently on.  She asked us to come back in a month.

I'm not going to lie-- it was ugly around here all weekend.  Every three to four hours, I would get a sinking feeling in my stomach knowing that I was going to have to fight with a three month old for 20 minutes, have him be miserable, and then feel defeated by tubing his feeds.

On top of all that, there was a big hefty dose of guilt-- how on Earth could I possibly be complaining??? I held, in my arms, living and breathing proof of miracles.  Too many parents do not get to bring their babies home, and lots bring their babies home with far greater medical needs than Parker's.  Shame.  To be honest, that didn't really affect my negative outlook.  At all.

I finally came up with a plan-- I felt like we had gotten less than zero help from the GI doctor and the speech therapist, both of whom I was looking to for good, solid strategies to start NOW, not 3 weeks or a month from now.  Instead, I decided to devote the amount of time it takes for Parker's feed to run through his tube to asking for God's help.  Help me be patient.  Help me be thankful for what I have been given.  Help me be willing to do whatever necessary for Parker to continue to grow and thrive.

I have to tell you, that helped my mindset a whole bunch, but it was still ugly times.  I kept asking myself, "He's on the tube because he doesn't eat, but at what point does it become-- he won't eat because he's on the tube?"

This morning, we got up and were going to get dressed for church.  Parker's current NG tube had been in for 7 days, which meant today was tube change day.  Mike and I talked about it, and decided that since he had proven he CAN drink from a bottle (his oral intake hovered around 4-5 oz a day from Tuesday on), we would pull the tube, leave it out, and see what happened.

So we did.

I have just tucked a tube-free Parker into his bed for the night.  Day One went pretty doggone well, if you ask me.  His oral intake quadrupled.  As I type this, he has taken 17 oz by mouth and we will try to feed him at least once more overnight.  That's a pretty big drop from his 30 oz that he was being tube fed, but we feel that it's a start. I'm hoping that tomorrow will be better, but if it's not, we will put the tube back in with a feeling of encouragement instead of defeat.  We have a pediatrician visit Tuesday, and I am hopeful we can keep it out until then and get her opinion on it.

I don't know what happened.  I don't know if pulling the tube made him more comfortable swallowing.  I don't know if our plan of offering him smaller amounts twice as often has helped.  I think a large part of it is exactly what everyone in the hospital told me, "He'll get it one day."  I had a hard time believing that there was nothing I could do to encourage that switch to flip... that I had to wait for it to be Parker's decision, but it's looking, if today is any indication, that it may in fact be the case.

I think I'm in for it with this little one.

Stinker.  But a tube-free (for now) stinker.


  1. I can NOT imagine what you are going through, won't even pretend to, but I do think the stubborn streak in your "Little Stinker: has taken him far. Laughs mixed in with the tears ... a life long process, right mom? You're doing GREAT ... just keep the FAITH. God will take you through it all.

  2. Praise the Lord. I wish daily that we lived closer so I could help you and love on you in this process and put myself in your shoes. I thought I would be writing the same posts.... We love reading every one of you entries and rejoice in them all. I just wish I could help more. God is good and we will continue to lift you up in prayer!!! Love you guys!!!!

  3. Abby, we have never met but I feel like I know you somehow through your posts. I've followed Parker's story for some time now after finding you guys from baby Jude's site. I don't know how you guys do it but you are all rock stars in my eyes! And it's totally understandable to have those bad days but I love that you always find a positive!! Keep up the good work!! Praying for you guys and all cdh babies as always!

  4. What a doll Parker is! Love his smile!

  5. Abby, I have been reading and enjoying your posts since Parker was born. The Lord led me here somehow, and today I felt the urging to encourage you. I am the mom of 6 blessings...5 on earth, and one in heaven. My first blessing faced many medical challenges in life, but the Lord has seen fit to bring her through all of them. She and we have been blessed by many miracles. She had MANY feeding challenges when she was a baby...many tears were shed by us and her. She was fed by NG tube until she was 18 months old...never took a bottle...EVER...but not because we did not try. Feeding pumps...NG tube changes...syringes...little sleep...oh, I can so relate!! I would encourage you to keep trusting that the Lord has brought Parker so far, and He is not going to abandon you now. God created Parker, He knows Parker's every need...He is faithful! Take it one feeding at a time...and know that he will not likely go to Kindergarten with an NG tube! ;0)

  6. Oh my goodness, that is awesome! It seems to me like swallowing with a tube down your throat would be pretty uncomfortable. I hope he keeps drinking those bottles and can ditch that tube altogether.

    ~ Cindy
    mom to Claire, born with CDH in 2007

  7. Here's my unsolicited advice ;) Keep the tube out unless he is really not doing well. It seems he has a buffer of healthy stores being on the 90th percentile. I think he will "get it" and do better as you have seen with the tube out. And eventually, hunger will get the best of him. Jacob was only on the 6th percentile so we didn't have the luxury of waiting for it to all work itself out. You are doing a great job! I'll be praying for the ever needed patience needed and peace of heart that this too shall pass! He looks so good! My heart is smiling for your family!

    God bless,

    P.S. If for some reason (like illness-even a simple cold) the tube has to be reinserted well after he's mastered the bottle, don't feel defeated. This happened to Jacob and I was scared about taking steps backwards. Once he was healthy, he was able to get right back to normal eating. It was frustrating until I realized how temporary it was.

  8. I've been reading your blog since right before Parker was born. I'm so glad he is home and doing well. My first baby was in the NICU due to being born prematurely at 32 weeks. His only issue thank G-d was eating. He was being tube fed and bottle fed, but mostly tube fed because he wouldn't eat well from a bottle. One day the tube fell out during a feed and he took the bottle so well that I begged the nurses not to put it back in because I think that was the problem. They didn't listen. Days went by with little progress, and again the tube either feel out or needed to be changed and I begged the nurses not to put another one in and just to see how he did. I am happy to report that the tube never went back in. He started eating like a champ! I am almost positive that the tube annoys them when they are trying to eat from a bottle so they don't want to do it, or they are smarter than us and say why bother doing all that work when I can just get fed through the tube. I hope that Parker continues to do well with out the tube!

  9. Ditto to everything that Katy said above... leave the tube out and see what he can do... watch for signs that he's not getting quite enough and put it back in if he needs it... feed him when he's hungry and he will get it... you're doing a great job. Yes. All that.

    Samuel came home on the NG tube with about 50% oral feeds, then 75% oral feeds. We fed him on demand as we would have our other kids (except for at night when we did what you have been doing, which is EX.HAUST.ING.) He still will take only the bottle that he came home from the hospital with - stinker. After 2 months, I decided to pull it and he seemed so happy to have that tube out that he started eating more and made up for the rest.

    Sometimes we'd put it back in for 3 or 4 days to top him up, give him a little extra strength so he could keep doing the hard work himself. Eventually, we didn't need to keep doing that. After he'd been sick and after he had his reherniation surgeries, we did the NG dance again. Not fun. But you can do it.

    I *know* it is hard and even harder because you are trying to tell yourself to just be grateful and it could be worse. But it is what it is.

    Hang in there, strong CDH mama.
    Mama to Samuel, lcdh, Feb1/11