The reflux adventure continues.  Our wonderful doctor prescribed Zegerid, which is what we wanted to try, but it may take several days to become effective, so Daniel will need to continue Zantac for a while.  The doctors and pharmacists don’t seem to know this, but the parents in the forums do.  So there is a light at the end of the tunnel, just the tunnel is probably 5 to 14 days longer.

One of the worst things about the Zantac is the insomnia.  A baby screaming with acid in his throat is very pitiful.  But another pitiful thing is a two-month-old baby that wants to sleep so bad try everything in his little power to try to induce sleep.  Daniel has only gotten about half the sleep he should since starting Zantac.  And lately, even that sleep is really difficult to achieve and can usually only occur with Daniel laying on Mama or Mimi.  So pray this new drug kicks in quickly so we can finally get Daniel off Zantac and finally get this poor baby some sleep.

Another evil of Zantac is that it can become ineffective with time.  We don’t know if this has happened or if he outgrew his dose, but toward the end of the 12-hour period after taking Zantac, Daniel will have acid pain.  So the poor thing has all the bad side effects and the acid.  Yesterday morning he cried for an hour with acid pain.  After Papa consoled him to sleep he laid him down and this is what Daniel did.  He’s just expressing his true feelings about acid.

Today Daniel is two months old.  It’s hard to believe.  We didn’t get any pictures because we didn’t have a good day.

As Daniel gets older, the debilitating side effects of Zantac are becoming more and more obvious.  After a while you begin to wonder if the cure is worse than the disease.  So yesterday evening we decided to not give his Zantac dose and see a) if his reflux was still as severe as it was at three weeks and b) what the side effects truly are.

It became obvious that his reflux and acid were just as bad and cost him severe pain, so we put him back on it today. We were also able to determine that these are truly Zantac side effects:

• Insomnia – the most sleep that Daniel manages to get in a day is 8 hours, where he should be getting 16 hours. Once he did not have Zantac, he slept almost continuously (except for waking up with acid in his throat).
• Stomach cramps – these usually start about an hour after he eats and cause him severe pain.
• Anxiety – this causes him to need to be held most of the time, and to be impatient.
• Aggravation of colic – without Zantac, his colic period was just a few hours. With Zantac he is colicky all day.

The only drug alternative our pediatricians can offer also has undesireable side effects, and our specific pediatrician is out of the office right now. Papa has an appointment with her on the 7th. Even if we can find another drug, Daniel will have to overlap Zantac with it for two weeks, so he has at least three more weeks of misery ahead of him.

Just to recap his current issues:

• It’s almost impossible to take him out right now. He becomes really anxious for two days or more if overstimulated.
• He can’t handle big routine change-ups right now. Uncle Daniel and Aunt Alice, the wonderful people they are, offered to babysit today while we went out and had a proper sit-down meal together. We were all set to take them up on that, but around noon it became obvious that with his hyper-anxiety from our experiment it wasn’t going to work out today.
• Mama can’t go anywhere right now. She has to hold him most of the day, and is only sleeping when Mimi or Papa sit with him during the day. Her normal sleeping hours are 7:20am until 1pm. In order for Papa to go to church on Sunday, she has to split her sleeping shift. She gets even less effective sleep that way, though, and it’s only worked out once in the last 9 weeks.
• He needs to be handled more than is comfortable. He has to be kept upright for an hour after each bottle, and the only way to relieve his colic (and even then for only a minute or two) is to hold him and constantly change his position.
• His poor mama is at her limit. She’s not sleeping or eating well, and people are telling her she’s failing. They’ve never heard of a mother needing help for more than a week or two, or they’ve never experienced a baby with Daniel’s extensive problems.

It’s been a rough couple of months, but also a time of joy and wonder we could never have imagined before. Please keep us in your prayers, and by God’s grace we’ll make it through this!

I try to just post the happy times.  Because of that, it looks like we only have happy times.  Quite the contrary is true.  I actually grab the camera and snap pictures during any good times I can.

Little Daniel has a hard time.  Life is not easy for him at all.  Here are the issues:

• Reflux – we treat the reflux with Zantac.  Zantac has quite a few drawbacks, but other treatments have even worse side effects.  Daniel can’t handle a lot of additives that are in medications. The Zantac doesn’t get rid of the reflux, that just makes what comes up not burn and hurt.  He still gets choked.  He could still get fluid in his lungs if we don’t take care with how we feed and handle him.  To try to minimize these symptoms as much as possible we do the following:
  • Change his diaper before feeding.  That way he is only on his back with an empty stomach.  If he has a leak or blowout at other times, we have to carefully change him keeping him from laying flat on his back.  That can be quite the workout.
  • Feed him in a slightly elevated position and keep him from eating too fast.  He can still sometimes choke and we sit him up to help him recover.
  • Keep him upright for 20 to 30 minutes after he eats.  This gives the milk time to move on from the stomach.
  • Tummy sleeping – this is a big faux pas today with the whole Back to Sleep campaign.  Tummy sleeping helps keep his milk down and also keeps him from getting choked on spit up.
  • Feeding less, and more often.  Most babies his age have started sleeping a stretch at night or have extended times between feedings.  Bigger feedings increase reflux, so he does better eating less but more times a day.  He eats every three hours.
• Colic – the great infant mystery.  There are lots of theories as to what causes colic, and I suppose it could be diffent causes in different babies.  Daniel begins to get fussy in the afternoon, but it increases to absolute misery between midnight and 3:30 a.m.  Even if he can remain somewhat calm at night, he can’t sleep, and is therefore very sleep deprived.  Zantac can cause anxiety and headaches, so we don’t know if that is making colic even worse.
• Gas – Daniel has suffered with gas from the beginning.  Zantac slows down his digestive system, so it makes the gas worse and makes it hard for Daniel to pass the gas.  Sometimes Daniel screams with pain.
• Sleep – because of colic and Zantac side effects, Daniel has a hard time sleeping.  He sleeps the best in the morning with it becoming more and more difficult the further he gets into his colic hours.  He looks tired almost all of the time.  There are so many pitures I haven’t posted because he looks so tired.

All this takes it’s toll on Mama.  Daniel has so much pain and discomfort it breaks my heart and is very hard to bear.  In addition to his already rigorous schedule, since he can’t nurse, I have to pump in between his feedings.  I spend nearly all my time dealing with things regarding his feeding.  I’m either pumping, feeding him, keeping him elevated after feeding, or cleaning his bottles.  During a majority of the day, I’m trying to do all these things while holding him because he’s either fussing, screaming or tired and can’t sleep.

One of the few things keeping me alive is that my mom comes over on the week days and takes care of Daniel from 7 a.m. to 2 p.m. so that I can get a little sleep and get a couple of things done.  Papa gives me this nap on the weekends.  This is the only sleep I get.  The rest of the time is pretty intense with a sad/pained infant and the stress of keeping up with pumping and feeding.

Sorry to be a downer, but I thought you needed the rest of the story.

Mama and I have pretty much finished up the gift registries for Daniel, so we’re ready for you to buy us stuff.

Just kidding. But seriously, if you look at them you’ll notice a lack of something in particular: toys. When Mama and I went to scope them out at the store, we were shocked to discover that not a one of them was made in this country.

At this point in time, a small-to-medium percentage of Chinese imports are simply unsafe, and we ask that you not buy anything from China that can’t be washed and detoxified. We have pretty high confidence that everything on the wish list–Chinese or otherwise–can be rinsed or aired out well enough, but we simply don’t have the same confidence in those toys and other things that will spend a lot of time in the little guy’s mouth. Most of them are probably fine, but we won’t risk his safety and so we decided not to accept toys made in countries where human rights are largely ignored. 

We have no intention of depriving Daniel of his fun, but we’ve decided to buy only high quality toys for him. Thanks so much for your understanding.

– Papa