Wednesday, August 26, 2015

Dog Days of August

It's been almost a month since our last post, and overall, Henry's doing OK. A lot of our focus this month has been on his feeds, as we try and get him to where he should be for his age, while being careful not to stress his body by doing too much, too quickly.

We started the month by introducing Henry to solid foods, as we worked on condensing his daytime feeds. After a week of some soy-free rice cereal, Henry also got to try pears and a little bit of apple. We tried to pace ourselves as we increased the rate of his feeds, and they are now running over an hour and a half every three hours. Most feeds run faster, as we are letting him take an ounce and a half by bottle at the start of the feed.

Henry is getting stronger every day. He is now over 17-1/2 pounds, and is up around the 25th percentile for his age. He is still a little behind on his milestones, but he is sitting up (mostly) unassisted for long stretches. He's not rolling over (except in his sleep), but he is getting close. 

We have begun regular visits from TARC's Tiny-K program, helping us learn how we can help Henry meet these milestones. We also continue to get weekly visits from a home-health nurse to help keep an eye on his vitals.

Over the past two weeks, Henry has been noticeably fussier. He isn't sleeping overnight as well as he had been. In some cases he is crying out four or five times a night after midnight. More concerning to us is that we feel his breathing rate has increased. We mentioned this last week to our nurse, and our consensus was that he may have some increased acid reflux with the introduction of bottles and solids. So, we had Henry's antacid increased to twice a day. On Tuesday, we mentioned to our nurse that we hadn't seen much of a change. She called up to our cardiologist's office at Children's Mercy, and they asked us to bring Henry in for a quick check.

This meant that Tuesday was our first trip to the ER! It was a quiet drive up as we were both anxious. They did chest and abdominal x-rays to make sure there was no fluid build up in his lungs and that there was no signs of pneumatosis. Both x-rays came back fine and we were told to follow up with Henry's pediatrician by the end of the week.

Just like the docs in the ER (and nearly every other doctor over the last seven months), Henry's pediatrician said he looks fine! She did think his nose looked puffy, and Henry had been rubbing his eyes a lot lately, too. On top of everything else, Henry might just be dealing with hay fever! He is now taking Zyrtec and we have backed off of the solid foods for now, hoping this helps him over the next week or so.

The past week has been very stressful on Paige and I. It is heartbreaking not being able to comfort Henry when he gets worked up. We want to help him grow and learn how to calm himself, and go to bed by himself, but watching the monitors last night only reminded us how fast his heart will beat and how low his O2 level drops when he gets upset. It is a reminder that no matter how well Henry looks, he still a fragile little boy.

Although it has been a little stressful lately, Henry really is doing well. And it sure helps all of us that he's at home! Our friend Mary helped us get some really nice portraits of Henry earlier this month and our favorites are posted in an album at the link below. Enjoy!



1 comment:

  1. Hoping Zyrtec is the answer and Henry is feeling better in no time. Handsome boy!

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