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!!!!!!!
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!
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.