No Such Thing As Normal

Is it normal for a 5 month old to be so happy and peaceful?  And to sleep so well all night?  Maybe she's just that happy to not have a tube down her nose?

I feel like the past few weeks Hannah has been out of the woods. It has been refreshing to have no tube and to be able to give her a bottle.  It's almost like a normal baby except for the thickener and the arduous process of making each bottle and waiting 10 to 15 minutes for it to be thick enough.  She's kind of a sloppy eater but it is working and she is learning to be more coordinated. Her growth is finally starting to catch up; she's almost 15 lbs now and is in the 38th percentile.  She is developmentally on track.  With more tummy time, her arms, neck, shoulders, and back muscles are getting stronger and she's much more active.  She is trying to get her knees under her to try to crawl and is almost able to maintain a sitting position without plopping over right away. My babies have never been good sitters at this age and have always learned to crawl first.  Technically I could start giving her solid foods but I'm hesitant and feeling somewhat protective and I'm not in a hurry to introduce something new to learn to swallow.

I'm so glad to be finally out of the murky fog of a seemingly endless winter.  In a way, Hannah's whole life has been one long winter...being born right before the holidays and then having 4 hospitalizations, flu season quarantine, surgery, and a tube all winter. Her immune system seems to be strong now.  She got four synagis shots. (That horribly incompetent pharmacy made us jump through so many hoops for the first one, but the subsequent ones have been a breeze!)

While Hannah is happy and growing and sleeping, this whole new-baby experience still doesn't feel normal.  I feel especially protective of Hannah, and I'm hesitant to take her far from home because her feeding process is so complicated.  She should really be getting a bottle every 3 hours, but she's just so chilled out most of the time that she'll often go 4 or 5 hours without getting hungry. I have to be really on the ball to start preparing the next bottle before she falls asleep and has too much time between feedings.

In the past weeks I made the difficult decision to quit pumping. I had a lot of internal turmoil over this decision.  Part of me feels like it was selfish and I am trying not to feel guilty about it. But on the other hand I had a lot of good reasons. It will be good for me and my body to have a break. It will make things a lot simpler to remove some more steps from this whole bottle-feeding process and not have the pumping supplies to wash all the time. I feel okay with it since we made it almost 6 months and Hannah's immune system is strong. If I had any hope that she would be able to nurse again in the future I would have stuck it out longer, but with needing thickened liquids and not remembering how to nurse anyway, pumping suddenly became a tedious, time consuming, isolating, and menial chore that I was beginning to resent.

While it would have been nice to have a stockpile in the freezer, I only had a hundred ounces saved up, which didn't last very long. I had previously donated several hundred ounces of breastmilk to other moms in need which is something that I have always wanted to do and I'm glad I was able to do that when I had a surplus.

Hannah modeling my Etsy blockbuster:
A baby graduation gown!

With Hannah out of the woods, we don't have 2 or 3 doctor's apptointments each week.  I took a chance on opening up my Etsy store again and met overwhelming success. For the past 6 weeks I've been sewing with manic intensity and was able to make several thousand dollars! Its been very busy, but Chris has been incredibly supportive and it's been awesome to have some fun money for extras we otherwise couldn't afford! My goal was to earn enough for a plane ticket to visit my BFF in Anchorage.  I seriosuly need a break from kids even if it's just for a couple days. I made enough money for my plane ticket and then some!  I got a new laptop and a new bed for us.  And if business keeps booming I'll pay for the kids to go to summer camp too.

Another swallow study

On Sunday I noticed that Hannah was starting to have a very wet cough and sounded congested during and after her bottle. I am developing a pretty good ear for what it sounds like when she is aspirating. So on Tuesday we went to see Dr. Johnson and had him listen to her lungs. He referred us for another swallow study, which we were able to do the following day, Wednesday. (Getting a swallow study at American Fork hospital was so much closer and way less busy than going all the way to Primary Children's!)  In case you've been counting, this is her 4th swallow study and her 5th time drinking barium. (Yummy!)

As I suspected, Hannah is aspirating even on nectar thick liquid, but not until she's been drinking and tiring out for a few minutes. While only a small fraction of each bolus (swallow) goes down her airway, after time that will add up and she could develop aspiration pnemonia. She has always had a delayed cough, meaning that she's not effective at clearing her throat or coughing out what goes into her voicebox. The SLP (speech language pathologist) and radiologist indicated that the sounds I was hearing are not necessarily coming from her lungs, but are of milk and mucus superficially coating the back of her throat. This isn't as dangerous, but it's kind of confusing and concerning. Her lungs sounded evenly wheezy on both sides, which is supposed to be reassuring because if she had fluid in her lungs, it would sound wheezy on just one side (this is also very confusing to me).

I'm feeling discouraged by the swallow study because the next level of thickness is honey, which means buying new nipples again that can accommodate HONEY, teaching Hannah to work extra hard to drink it, and adjusting to a new thickness and therefore a new balance of prune juice to combat the constipation that comes with it.

The suggestion from the SLP was to continue with nectar thick and give the bottle for 1 minute and then let her have a break for 1 minute so that she can rest frequently.  Repeat ad nauseam. This would make it take upwards of 20 minutes to take a whole 4 or 5 oz bottle. Plus I quickly learned that if you give a hungry baby half an ounce and then make her stop, she will get really really mad at you.

I'm always kind of frustrated when I ask questions about babies aspirating, because there never seems to be good answers.  How do I know if she's aspirating? How much aspirating is okay and how much is too much?  How quickly would she develop pneumonia? And how would I know if she does?  At what point do I take her to the ER?  How do I get her to not aspirate?   We definitely prefer not to go back on the tube because she needs to learn the skill of coordinated swallowing and get stronger and develop those muscles.

As of yet, Hannah is not getting sick. Is it only a matter of time?  Apparently some individuals aspirate once or twice and get sick immediately. Fortunately Hannah is not one of those people and she has been able to stay healthy lately.  Of course that could change at any time if she does develop pneumonia.  I take her temperature regularly, she has the Owlet pulse-ox monitor she wears at night, and I am now all too familiar with the symptoms of choking and cyanosis.  Another way that this is not a normal baby experience:  I watch Hannah like a hawk. Feeding time is especially tenuous.  Every. Single. Day.

Now that I've seen a fair amount of swallow studies, normal and abnormal, I plan to compare this most recent swallow study with the post-op one from April 9th to see if the cricopharyngeas looks any different. Maybe it has become enlarged again and Hannah needs another dilation or something. Worst case scenario, if for some reason her anatomy is abnormal again and it was no longer safe to eat by mouth anymore, I would go see the ENT surgeon in Provo again.  (If she had to go back on a tube, I would rather it be a G-tube at this age than an NG tube because Hannah will be mobile and crawling soon!)  Like I said, that is worst case scenario and I think it is extremely unlikely, but since this is such a rare condition, there is no such thing as Normal!

For now we will pace Hannah on nectar thick and experiment a little with honey thick. Who knows what next week will bring!