Out of the Woods

Hannah is officially 6 months old!  She has surpassed 15 pounds and is now in the 37th percentile, graduated to size 2 diapers, and is wearing 6 to 9 month clothes. She is chubby and plump just like a regular baby!  She learned how to laugh! She is really great at tummy time and is trying to move around, but she looks mostly like a beached seal, rotating on her tummy.  Pretty soon she'll be rolling like crazy and trying to crawl! She is getting better at reaching for things and trying to put them in her mouth. She mostly prefers to suck on her hands and her blanket and hasn't quite got the hang of getting the binky into her mouth without help. 

So far, Hannah is not interested in solid food on a spoon; she just spits it right out, with a disgusted look on her face. She still sleeps great at night and is generally a very peaceful baby. If she's tired, she cries and falls asleep.  If she's stinky, she cries and gets changed. If she's hungry, she cries and gets fed.  She is just not a fussy baby who cries for no reason. What a blessing! She is usually content in her bouncy seat or exersaucer so long as she can see all the action and craziness going on around her. She is used to lots of NOISE and sleeps right through it!

I have to set a mental timer to make a bottle every 3 to 4 hours because unless I keep track of her intake and start getting her bottle ready half an hour in advance, she will not get enough calories each day. Yeah, a day or a few days in a row of having a calorie deficit isn't a big deal; most babies will make up for it in subsequent days. But Hannah's "body clock" doesn't regulate very well, and if I didn't stay on top of this every day, she would plateau or even lose weight.  

Hannah is still on nectar thick liquids. She does okay but I can still hear wheezing in her lungs and throat most of the time. When you and I would normally cough to clear our throats, Hannah doesn't. When she does cough, it is delayed and not very effective. Having fluid in her airways could cause her to become sick at any time. I watch closely for signs of fever, trouble breathing, cyanosis, etc. I would not be surprised if she did become sick, although we are grateful for every day we spend at home rather than in the hospital. We have weeks where we worry more than other weeks.  Right now I'm only a normal amount of worried!

This is how we stretch.

In many ways, Hannah is just a normal, happy baby!  Most people have no idea that she was on a tube just 2 months ago, or that she had surgery, failed to thrive for a while and had several hospitalizations.  The tube was kind of a statement that announced to everyone we met: "we're stressed and going through a lot,  This baby isn't normal." At first, when we ditched the tube, I felt like I had to explain this to people, lest they think she was just a regular baby. But now it is refreshing to have people fawn over her and complement her cuteness and "those eyes!" without feeling like I have to qualify her existence with, "Yes, buuuuut...."  If the conversation flows towards a more personal discussion of newborns and her growth or feeding regimen, I simply say, "She had a bit of a bumpy start, but she's out of the woods now."  And if they want the whole story, I'll tell it.  I'm so glad I get to say that she's out of the woods!

Grow, baby, grow

4-3-3-5
Start with 4 ounces of very warm water.  Add 3 scoops of formula. Mix well.  Add 3 scoops of thickener.  Mix well.  Add 5 mL apple juice (to combat constipation that comes from the thickener).  Let sit for 5-10 minutes until thick.  Mix well again.  Feed to the baby, with her sitting almost upright, and stopping every few minutes for baby to rest, burp, and get mad.  Cross your fingers that she drinks it all.  Repeat every 3-4 hours.

For about the last 2 weeks, Hannah hasn't been eating as much as before.  She used to drain a 5 oz bottle and then cry that it was empty. But recently, she hasn't had as much of an appetite.  She will only take a full bottle first thing in the morning, after going 10-12 hours overnight.  All the other times she doesn't want to take more than 2 or 3 ounces, and sometimes even less.  If she had better, more established hunger cues, I would trust that she knows how much her body needs.  She had a continuous feed on the NG tube for so long that she hardly ever tells us when she is hungry.  She never learned to self-regulate how much food she gets.

So naturally, I have been hyper-attentive to the volume, and ultimately how many calories she gets each day, and then how her weight charts each week.  She had a bumpy start, after all, and lost weight, failed to thrive, and has been playing catch-up ever since.  Back in January, she dropped into the 5th percentile for a while, down from the 90th percentile at birth  She's in the 38th percentile now, which is amazing progress!

Her decreased appetite also coincided with when she started aspirating (on nectar thickness, no less), and also when I quit pumping and ran out of breast milk.  For a few weeks, she had been getting half breast milk and half formula while I used up my freezer stash, in the hopes that transitioning to 100% formula wouldn't be that noticeable in terms of taste and ease of digestion.  I'm not sure why exactly switching to all-formula would lead to her starting to aspirate, or have less of an appetite. Maybe the aspirating caused the decreased appetite.  Maybe the taste of formula caused the decreased appetite.  Maybe the different consistency of formula caused her to aspirate, even with the thickener.  My mom even suggested that it might be too thick, since formula is thicker than milk, making her tired faster.  (She aspirates when she is "tired," or rather, the swallowing mechanism has been working for a few minutes and those muscles get "tired").  Maybe these factors are unrelated and the timing is a coincidence.  Either way, it is a reason to feel guilt over my decision to quit pumping, in case that is the cause.

MORE MATH
Hannah needs 80 calories per kg of weight right now in order to grow, which is 544 calories per day.  And at 26 calories per ounce, that means 21 ounces or 630 mL.  For the last 2 weeks, she has had a calorie deficit every single day, and not just by a little.  Being the math nerd that I am, I calculated that she is only getting 72-84 % of her needed calories.  Normally, if a baby had a calorie deficit for a day or two, she would make up for it in subsequent days, but as we've already established, Hannah isn't normal. 

I went in for a weight check last week and sure enough, she had only gained 2 ounces in a week and a half.  The doctor's opinion was that Hannah's lower appetite relates to the change in taste of formula versus breast milk, and suggested we try a different formula that supposedly has more flavor (Doh!  I just bought 5 cans of the other kind!).   Another change I made is that I switched from adding 5 mL prune juice twice a day to 5 mL apple juice 5 times a day, hoping to help improve the flavor.  I was also able to accept about 100 ounces of donated breast milk yesterday, and have been mixing it in so that Hannah has half and half again, and I can already tell that it's making a difference to her.  Again, clue the MOM GUILT over quitting pumping.  It might not be too late...Do I start pumping every 3 hours again like when I had a newborn, to see if I can get my milk back?  Obviously, Hannah prefers it.

Just 2 weeks shy of being 6 months old, Hannah is old enough to start solid foods.  This is on my list of things to do this week, but I'm a little hesitant to introduce something new for her to learn how to swallow.  It might turn out to be a good source of calories if she consistently refuses to drink her whole bottle.

With all the crap we've been through, I've noticed that I have a tendency to be negative and pessimistic about our whole situation. But really, things are 1000% better than they were a few months ago.  We have been through a lot and have come a long way!  I need to find the "wins" and celebrate them better.  Here they are: Hannah is taking food by mouth.  Hannah is growing.  Hannah is healthy.  Hannah is sleeping all night.  And Hannah is happy!  This week she finally laughed and I was able to catch it on video.  That was my favorite Mother's Day present!

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!