One Year!

It's hard to believe that Hannah is 1 year old! The first half of her life was so stressful just trying to keep her alive, and the second half was busy taking care of my family and trying to find my own sanity. It turns out that even with a normal healthy baby, five kids is a lot of work and is really loud!

In the first 6 months of her life, Hannah had 3 ER visits, five hospitalizations at 3 hospitals, 4 months on a feeding tube, 2 respiratory viruses, 1 febrile seizure, a month on oxygen, 1 esophagram and 5 swallow studies, 2 esophagoscopies, 2 surgical procedures, 1 lumbar puncture, 1 MRI, 1 CT scan, a million x-rays, a dozen weight checks, and relearned how to eat by mouth (which is actually really hard).  I became an expert on inserting an NG tube all by myself, although taping it to her face just right was actually harder.  I could spell cricopharyngeal achalasia in my sleep.  Despite these circumstances, Hannah grew and learned to laugh and smile at her parents and siblings, and we could tell that she knew she was safe and loved.

In the second six months, she learned how to roll, sit, crawl, and then walk, has traveled to Illinois and Washington State and all points in between, and at last checkup was 18 and 1/2 pounds. She has 6 baby teeth, has put on some thunder thighs and has grown a head of curly dark hair. She is thriving and is a smiley happy playful little girl. She loves being tickled, taking a bath, or playing peek a boo.  She also loves pulling hair and eating our faces.

This year has certainly been a year of medical needs. Hannah has seen countless doctors and technicians and therapists. She still sees a feeding therapist every week or two and we are working on getting her to eat more table foods. While developmentally on track in every other way, she really is 4 months behind on all eating milestones.  She just doesn't want to try new things!  Except for cheerios, just about anything chunky that she can't hold onto she loses in her mouth and gags on. By 6-9 months, babies should have a certain level of interest in self-feeding and holding onto their own bottle. Hannah is just now learning to hold her own bottle.

What is the baby-tossing game called?
Because Hannah loves it.

Hannah also still has thickener in her bottle. Even though she technically passed her swallow study in August, we parents used our brains and powers of observation to identify that she drinks more of her bottle and coughs less while still at half nectar thickness.  It is a very delicate balance of thickener amount and speed of the bottle nipple. The thickener makes the liquid go down a little bit slower allowing her more time to get it down safely. 

Hannah sleeps most of the night, but I still have to feed her at 11 pm or midnight before I go to bed otherwise she will wake up at 3 a.m.  This is a side effect of not getting enough calories orally throughout the day.  As she learns to eat new things and as she learns to eat MORE of them, we can get more of her calories in her during the daytime and she will hopefully sleep all night long and not wake up at 3 a.m.  Chris and I have never had to share a room with a baby before now, and Hannah is a light sleeper, making it complicated for any of us to get a good night sleep and have Chris get out the door for work early.

On a more personal note, once Hannah's health crisis had passed and she was really out of the woods, I completely had a nervous breakdown!  I had been in caregiver mode and so completely obsessed with her needs and getting to some kind of safe finish line, that I didn't have any emotional reserves left for myself, my children, or my husband. After she came off the tube, I threw myself into sewing for my Etsy store and abandoned all other responsibilities. June, July, and August found me questioning what I want to be when I grow up and whether I should really be a stay at home mom at all rather than a career mom with her kids in daycare, or a mom who drives off into the sunset by herself and never looks back. So far I'm still here-trying to anchor myself in this role of mother to 5 and find a balance of self-identify, service to my family, and starting a small business.  But this blog isn't about me.



Hannah turned one on Thanksgiving Day, and we celebrated in Washington with Lola, Great Lola, and Uncle Robert.  She ate pizza crust and pigged out on cake, and then at Thanksiving dinner refused to eat anything at all! 

114 Days

Hannah was on the NG feeding tube for 114 days.  114 long, uncertain, exhausting days and nights. 

Today, July 19, marks 114 days since Hannah has been off the tube!  After surgery, Hannah was almost like a newborn again with regards to her oral skills.  She had to learn how to swallow liquids even though we didn't realize she was still aspirating, which had to be confusing for her.  Then she had to learn to swallow thickened liquids and trust that it really was safe to swallow after all.  She had to learn how to be hungry, and that taking a bottle resulted in her hunger subsiding (something we are still working on!).  It has been a challenge to get all of her calories into her each day. She is still on almost double formula because she just doesn't want to drink more than 10-15 ounces a day.  She should be getting 20+ ounces a day.  Most of the time she will stop drinking each bottle after just 1-2 ounces, and she can't be even a little distracted or she won't take it at all.  I can get her to drink a full 4-ounces only when she is asleep.  Eating when asleep is not ideal, but it does get the calories into her and helps her strengthen her swallowing muscles and practice the suck, swallow, breathe pattern.

Isn't this how to crawl?

Hannah has made incredible progress in just the last 3 weeks!  She learned to sit-up and rock on all fours and move around on her belly.  Hannah has had the least conventional crawl of any of my kids: her "all fours" meant two hands and two feet before she realized she could crawl on her knees. Silly girl! Now that she is mobile, she is getting into everything, and finally putting things in her mouth, something other babies do much earlier than 8 months old.   When my mom came out to Utah a few weeks ago, we noted that Hannah did not put things in her mouth at all.  And since then, Hannah has started exploring things with her mouth to experience their taste and texture.  She drools more and is finally accepting some simple cereal and fruit combinations on a spoon.  (I have been trying to get her to take solids for 2 months now!)  What an incredible transformation Hannah has had over the last few weeks!  July has proven to be the month of mobility, willingness to eat solids, and mastering the pincher grasp.

Hannah is still a pretty good sleeper.  I did "rock the boat" a bit and go on a road trip across the country!  Being in a pack 'n play in Grandma's basement is a little different for Hannah than being at home, and our routines are non-existent, but she is learning and progressing nonetheless.  She was an incredible traveler: we spent 2 days in the car driving and Hannah was a trooper.  She hardly fussed about being in her car seat so much, and I was able to pluck the bottle into her mouth from the passenger seat as she fell asleep and my mom drove.   I hope she does as well driving back home in a few weeks! 

Can you even see her scar?

It might seem like an arbitrary date, or you might think I'm silly to celebrate that her post-tube days surpass her tube days, but to me, it's a big milestone.  The past 114 days have been much less scary than the 114 before it, and Hannah has progressed by leaps and bounds.  She is catching up on her oral skills, and her mobility and development are on par.  I expect that August and September will bring a swallow study and maybe (hopefully) she will graduate to thin liquids.  She will probably try to start walking soon! (I'm not ready!)   In another 114 days, she'll be days away from her first birthday and the anniversaries of all the crazy things that have happened in her life.  For now, she appears to be a normal, chubby, happy baby with just an almost-faded one-inch battle scar on her neck.

6 Months

Impossible not to smile back
at that beautiful face.

Everyone who sees Hannah says she has the most amazing eyes and eyelashes. She is so attentive and will smile at you if you make eye contact. She loves reaching for you and stroking your face (or pulling your hair).

Last month Hannah met her Lola Pearly and her great Lola who were visiting from Washington State. We (finally) had her baby blessing at church on May 27.

Hannah's blessing day

Hannah is getting better at getting her calories every day, although some days she doesn't have as much of an appetite as others. At $25 for a canister of thickener that lasts 8 days and $17 for a canister of formula that lasts 2 1/2 days, I calculated that it costs about $10 per day to feed Hannah! I'm working on transitioning her to a cheaper thickener since she's getting formula now instead of breastmilk, which called for the super pricey thickener. (And the new thickener makes her poop smell like an actual garbage dump and it makes her bum raw. If that isn’t a first world problem…)

While she does often have a wet cough and chokes a little on her bottle sometimes, she seems to be staying healthy. The last time we saw her ENT, he concluded that her swallowing dysfunction is more a matter of functional ability rather than any residual anatomical abnormalities. Hopefully, she will get better at swallowing as she continues to practice and strengthen her swallowing muscles. We saw a pulmonologist last week to make sure we aren’t doing any damage to Hannah's lungs in case she is silently aspirating a little bit each time she takes a bottle. The pulmonologist was impressed at how well Hannah is thriving given her rocky start.  Nevertheless, she ordered a chest CT next week to make sure her lungs are clear.  It will most likely be perfectly normal, but we have to check anyway.  (And on July 1^st our insurance deductibles and out of pocket amounts reset, so we are doing everything possible before then!)  If for some reason the CT isn’t normal, we would probably have to do nebulizer treatments twice a day to strengthen her lungs.

Hannah had her 6 month check-up a few weeks ago and is almost in the 50th percentile!  She learned how to roll from her back to her front, which is much harder than front to back, and is getting better at staying sitting up instead of just flopping on to her face. She's SOOO close to crawling! She can get her knees up underneath her and looks like a little inchworm.  She’ll be crawling in another week or two.

While we’re on the subject of doctors, I just want to say that some doctors are incredible at listening and can gauge how much medical terminology you are familiar with while talking with you. They explain things respectfully and answer all your questions in a warm, inviting manner.  On the other hand, there are some doctors that throw out half a dozen words you don’t recognize without missing a beat, and have the body language, facial expressions, and tone of someone who thinks you are a moron if you didn’t go to medical school, and that you are a moron if another doctor made a prescription, did a procedure, or gave you information contrary to said new doctor’s preference.  I have met both types, and often their reputation for being abrasive or blunt has preceded them accurately.  Don’t get me wrong, I appreciate doctors being straightforward with me, but I also appreciate the benefit of the doubt that I am (usually) not a moron.

The coolest CT scanner you'll ever see!  Hannah was super chill and didn't need to be sedated.  We were there a total of 40 minutes!

Dad with his Mom, Grandma, Lexie and Hannah

I am working on converting this blog into a book for Hannah, so I've been reading all my posts from the beginning, editing, and adding pictures to a layout. It brings back so many thoughts and emotions. It wasn't that long ago, but it feels like a lifetime ago and I have already forgotten how incredibly stressful that period was. Just reading about it makes my head hurt again, my back and shoulder muscles tense up, and I get an unsettled nervous feeling in my stomach, which was my constant state from December to March.  Four months doesn't seem like that long right now, but back then it was an eternity. I would call it Uncertainty Limbo. Being in the thick of it without much precedent on what to expect, we had no idea how long it would take before we could reach any semblance of normal and finally be able to exhale.

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!

Pass/Fail

Hannah has had an esophagram and 3 swallow studies.  Both tests are fluoroscopic exams, meaning an xray is taken at 30 frames per second while she  drinks flavored barium, which shows up on the xray detailing digestive structures and the swallowing process.

When Hannah was 6 days old, she had an esophagram, which checked for an atresia or fistula in her esophagus, and it was discovered that she had a stricture of the cricopharyngeus.  A couple of weeks later, when she was about a month old, she had a swallow study to see if the dilation and Botox had been effective.

A swallow study is different than an esophagram because it looks at the functioning of the swallowing process including the palate and tongue and epiglottis. During a swallow study, a speech language pathologist or occupational therapist will usually administer barium in several thicknesses to find out what is the safest way to take food by mouth for a person with swallowing difficulty. The thicker the liquid, the slower it moves and the more it sticks together going down (or coming back up- it's also used for individuals with severe reflux).

You and I drink thin liquids such as milk and water and juice. Then there is nectar thickness, honey thickness, and pudding thickness. Pudding thickness is not a liquid at all, and you have to eat it with a spoon. Nectar thickness is hard to describe since I don't think I have ever actually seen nectar, but it's viscosity kind of reminds me of paint. Half nectar is halfway between thin liquid and nectar thickness. In Hannah's first two swallow studies in December and March, she never got to try anything besides thin liquids because she failed the study immediately by nature of not being able to pass liquids through at all past the esophageal blockage.  It was obvious that it was not safe for her to take any food by mouth. This is why she had the NG tube for 4 months.  So for several months we waited to see if anything would change in her esophagus; if the botox would ever take effect, or if she would somehow outgrow the narrowing (which as you call I thought was highly unlikely). The same thing happened in her swallow study again in March, after which the surgeon agreed to do surgery.

So on April 9th, Hannah had her post-op swallow study.  While she had been successfully getting all her food by mouth for almost 2 weeks at that point, it was still important to document that the surgery was a success and make sure that she was swallowing safely.   

Here's where we pause for a brief anatomy lesson. When you swallow, the brain sends signals to your mouth and throat to know what to do, and a series of muscular contractions takes place.   Your epiglottis covers your airway and the entire voice box kind of moves out of the way for the swallowing process to take place. If liquid or food goes past the epiglottis and into your airway, this is called aspirating. If the liquid goes past the epiglottis and partially into the voice box but not down the airway, this is called deep penetration and it is dangerous. It is understood that babies who have deep penetration when swallowing will eventually aspirate. If the liquid goes into the epiglottis and back out again without going into the voice box, it's called shallow penetration. While not ideal, shallow penetration is considered okay.

Back to Hannah's swallow study on April 9th. She didn't fail right off the bat like in the first two swallow studies, but she didn't really pass either. There was no stricture anymore, which means the surgery worked! But within seconds of taking thin liquid, she aspirated and didn't even cough. This is called silent aspiration, and you would not know it was happening unless you were watching it on  an x-ray.  If you drink too fast and it goes "down the wrong pipe," you cough because you have just aspirated.  Hannah didn't seem to notice and she coughed a minute or two after the fact. Even though her cough was delayed, it is still a good sign because she is learning that her airway needs to be cleared.

The next step was half nectar thickness, and she had deep penetration of the epiglottis. Still not safe.  With full nectar thickness, she did okay and had only shallow penetration, and we are calling it a win.

Before we did the study, I had suspected that there was a little bit of aspiration happening because she often would have a wet cough after having her bottle, but I wasn't too concerned because she was not in distress or getting sick.  Of course, had she been turning blue or starting to have a fever I would have stopped oral feeds immediately and put the tube back in. She has had an uncoordinated feeding pattern and an ineffective cough simply because she hasn't had much experience with eating.  We will reevaluate in three months.

The current feeding protocol is to thicken Hannah's milk with gelmix to nectar consistency. The slower moving liquid will allow her more time for the brain to signal what to do, and those muscles will get stronger.  She still gets the same volume and the same amount of calories.  In order to thicken like this, you first have to heat the milk up to 100 degrees (thank goodness for the bottle warmer! How have I not had this before?), Then we add the powdered formula for calorie fortification and mix well, and then several scoops of Gelmix which is a carob bean powder and mix again. Then you have to let it sit for 5 to 10 minutes while it thickens to a nectar consistency.  (especially hard to do with a hungry baby screaming at you). This process takes twice as long as just heating up a bottle, the bottles are harder to clean, and the gelmix is expensive.  The first container that I bought was $23 and lasted exactly one week. This method, in addition to exclusively pumping for 5 months, rates about a 4 out of 10 on the "convenient" scale.  I'm not entirely sure how we will ever go anywhere for more than 3 hours, because I would need to bring so much gear in order to prepare her bottle.

Last month our new challenge with finally having oral feeds was spitup.  This month's new challenge with having thickened liquid is constipation! Within a day or two of starting thickening, Hannah started to have a lot of discomfort pooping, so now we have to add prune juice to her milk several times a day.  We are still working on finding the right balance of all of these new elements.   The milk has to be thick enough to be safe to swallow and the nipple has to have a fast enough flow. We had level ones and twos and it was taking her 30 minutes to drink a bottle and she would get frustrated that it was taking so long or get tired and fall asleep. Then we have to give her just the right amount of prune juice (also thickened) to help her poop.  But not too much!

Although the new protocol is not ideal, we can handle it. I didn't even ugly cry when I got to my car after her study!  We are glad she is out of the woods, off the feeding tube, growing, and able to take all her food by mouth. And even though the feeding tube is long gone, after having listened to that feeding pump beeping at all hours of the day and night for 4 months, we still hear phantom beeping all the time.

All ready for her swallow study.
That's an x-ray machine on the right!

Tubeless

She's a hungry sweetheart.

It has been a little over 3 weeks since Hannah's surgery. At 9 days post-op she started taking a bottle and 11 days post op her tube came out for the last time, although we didn't realize it would be the last time.  She has been tubeless and has been getting all her food orally ever since and is gaining weight beautifully!  She will take three to four ounces at each feeding. What a miracle! She's getting plenty of calories and is finally filling out with chubby cheeks and plump thighs.

She prefers to sit almost
straight up while she takes her bottle

She has gone from the 5th percentile for weight on surgery date, to 15th percentile after a week and a half, and now she's in the 23rd percentile!  She has outgrown all of the newborn sleepers and is wearing 3-6 month clothes now. Hooray! It's incredible!

She has also grown a lot developmentally in the past few weeks.  When she had the tube, she didn't get much tummy time because it was so easy to pull the tube out and it was literally tying her down positionally.  Since becoming officially tubeless, she has more freedom to move around and she doesn't hate tummy time anymore.  She is able to lift up her head much better than before and is rolling over from her front to her back! She seems to really enjoy the change of scenery and the ability to move more freely. 

You can see the incicision site
on her neck here, healing very nicely.

During the day, Hannah is incredibly peaceful and happy. Once she is changed and fed, she is very content to sit in her vibrating papasan chair and watch wide-eyed the goings on (aka chaos) happening all around. She will chill there for over an hour at times without a peep.  She always returns a smile when we engage with her. She likes having something to look at such as a mirror, toy, or mobile and she is starting to reach for things. She can almost get the binky to her mouth. She loves peek-a-boo, especially with her big brother. We can almost get her to laugh, too!

Hannah is still sleeping incredibly well at night. She usually sleeps from 8 to 10 hours every night!  Sometimes she gets fussy around 4 or 6 a.m. and will take a bottle and go right back to sleep. She still loves the binky of course. 

Hannah and I have been going to Riverton weekly to see her feeding therapist.  Last week we were working on strategies to try to nurse again. Hannah has established a safe feeding regimen with her bottle, but I would really love to nurse again if possible, and I feel confident that Hannah will, I just don't know how to get us there!  Kristin gave me some ideas, but Hannah just isn't interested yet.  She arches her back and pushes away and cries if I try to get her to nurse.  Before each bottle, I try to see if she will latch on, but three strikes and I have to stop trying. We don't want to reinforce negative stimulus and cause the aversion to get worse or be traumatic. I'm determined to keep trying though. Maybe at some point I will a have to accept that it will never happen, but I'm not ready to throw in the towel yet. It would make life so much easier for me and save so much time to feed her directly than to pump 4-5 times a day in addition to bottle prep, bottle feeding time, and then washing all the supplies. 

Having no tube has made life so much easier for Hannah and for the rest of the family. It's so much easier to go places. And with Spring finally here, we are able to leave the house more and not have to worry so much about getting sick. I felt like a hermit all winter. We finally took Lexie and Hannah to church yesterday; a whole family of 7!

Church from 1-4pm is so hard!

Tender Mercies

Look Ma!  No Tube!

A tender mercy is a personal and timely blessing from God. It may come unexpectedly, or when you feel like you need it the most.  It speaks to your heart that God knows you and can hear your prayers. 

Two days post-op when we saw Hannah's feeding therapist, Kristin, the feeding protocol was nothing more than dipping Hannah's pacifier in milk and letting her suck it off. That was all she would take by mouth. If I tried to give her a bottle, she would straighten out and arch her back, cry, and turn away. We knew that we didn't want to overwhelm her with unwanted oral stimulation that would cause her further aversion. It was at first discouraging because we couldn't even tell if the surgery had been successful, we weren't sure how long it would take to know, and we didn't know when it would be safe to give her food by mouth. 

If Hannah didn't have a chance to get hungry or have room in her tummy to get full, she would never be interested in feeding orally.  So after the surgery, my focus was to aggressively increase Hannah's feeding volume and decrease the feeding time so that she could learn appropriate hunger cues. (See my last post about all the math!)  In order to have a true bolus feed, she would need 100 mL in only 30 minutes every three hours.  I would have to eventually set the feeding pump to 200 mL/hr.  One hundred mL is only a little more than 3 ounces, but this goal seemed daunting!  How could her little tummy, getting just 34 mL an hour, ever handle so much at once? I had no idea how quickly she could progress and how much her little tummy could handle. I worried that I might push her too much too quickly, and whether it would make her throw up and potentially aspirate.

Two days post up I increased her hourly volume from 34 to 40 mL. Then a few days later to 45 mL. Then 55.  Then 69. And each step of the way she seemed to be doing really well! I decided to carefully offer her a bottle after each off-period when her tummy had a chance to be empty.

She had a check-up that Friday, 7 days post-op, and her incision looked really good; no redness or swelling at the surgical site and no fever.  She weighed in at 12 lb 6 oz and was now in the 15th percentile for weight rather than the 5th percentile from a month before.  Yay for growing!  Hannah was given some eye drops for her crusty eyes and got her 4 month shots. She's progressing toward bolus-feeds, and she is growing. These are good things, and the current plan is working for now.  (The plan and forthcoming check-point is always changing!)

The first bottle. Such happy tears!

Imagine our surprise when on Sunday, 9 days post-op, she finally took a bottle and drank 30 mL!  No choking, no coughing, and certainly no turning blue. What a miracle!  She was very hesitant at first and her body was very rigid, and she was very sloppy as she tried this new thing. I could tell she was hesitant but hungry. She definitely did not want to recline in my arms, preferring instead to be held in am almost upright sitting position.

I will take credit for being vigilant and perseverent about Hannah's care. I will take credit for pumping 4-5 times a day for 4 months. (That has certainly been a labor of love!)  But I can't take credit for Hannah taking a bottle all of a sudden on day 9 and swallowing perfectly.  This is our most incredible Tender Mercy by the grace of God!  I give credit to the medical skill of our surgeon and to the healing power of God.  Plus, Hannah is pretty much a rockstar.

So happy!

Oh the shouts of joy and celebrating at our house!  I laughed and cried happy tears of joy and thanked God.  The kids were shouting and cheering in amazement.  And I'm still laughing and crying and offering up prayers of thanks every time I hear the beautiful sound of my baby swallowing! 

On Sunday, she drank about 30 mL from a bottle.  Of course, this was just a start. We knew that before we could kiss the tube goodbye, Hannah would need to be able to take all of her food by mouth, 100 mL at a  time, 7 times per day.  Now we have a new plan: Every three hours give Hannah as much as she will take by mouth and give the rest by tube.  We would do this until she could take a full 100ml at once, 7 times a day. 

Each day after that she took more at a time than the day before! Sunday she took up to 40 mL at a time. Monday she took 50.  Tuesday she took 75.  And each time I was blown away with her progress!   On Tuesday I went to get her out of the car and was surprised and disappointed to see that she had pulled her tube out (she had been pulling it out accidentally with increasing frequency-probably two or three times per week).  At that moment getting her out of the car I had a "forward glimpse" kind of moment and thought to myself "some day her tube will come out for the last time.  I wonder what that will be like" and teared up with a lump in my throat (which I do often). I had no idea that this might be it!

I was planning to put her tube back in when I got home, but she was doing so well with bottle feeding that I thought she could go the rest of the evening and I'd put it back in before bed to make up for her remaining calories while she slept. And then I thought, "What if I didn't?"  I decided to let her go overnight and see if she woke up hungry, but she slept through the night. 

New feeding protocol
from therapist on Wednesday

Wednesday we saw Kristin again and she was just as blown away by Hannah's progress as we were! We got a new protocol to follow regarding Hannah's feeding, which is amazing considering how limited we were just a week before.  I always show up with a list of questions and soak in as much information as I possibly can.  While I have learned a lot about this cross-section of medical terminology and care, and I do have very good judgement, I was still uncertain what the best method was to get her adequate calories and whether she would need the tube overnight and for her medications. Wednesday and Thursday Hannah still had only oral feeds and was able to take in 80 mL at a time.  We were getting really close to our goal of 100 mL!

She has had a calorie deficit since the tube came out on Tuesday, but I was confident that she was going to get to the 100mL goal, seeing as she was taking in more orally each day.  The question was whether having a calorie deficit would cause her weight to plateau or even decrease.  At her checkup yesterday, 2 weeks post-op, she weighed in at 12 lbs 15 oz, meaning she had gained 9 ounces in just a week, while having oral feeds instead of just tube feeds!  Oh happy day!  The doc said he couldn't tell who was smiling more, Hannah or me.

I got her a mobile and she loves it!

Now we have the all clear to keep feeding her orally, and to even nurse as much as Hannah wants!  (She did latch on for 2-3 minutes a couple times, but for the most part, she doesn't really want to nurse yet.)  Plus, since she is catching up on her weight, she doesn't need as many calories as before.  Instead of 114 calories per kg of weight, my new formula is 80-100 calories per kg, meaning she only needs 530-660 mL per day instead of 710, and she's practically there!  Dr. Johnson also told me to let her regulate her feeding, so I don't have to wake her up in the middle of the night.


This is what real babies do! They eat until they are full and their tummy gets bigger and they don't have a tube taped to their face!  Oh the freedom of not having a tube! Hannah is so happy and playful!  She can lay on her tummy or fuss without me worrying about her tube coming out.  And she even rolled over! She can wake up and cry for food like a normal 4 month old.  This is a whole new world, and we are so excited!

She even takes a bottle from big sister!

Hannah's amazing healing and seamless transition to bottle feeding is a miracle!  It is truly  a Tender Mercy to me that she is taking all of her food by mouth less than two weeks after surgery.  Look at where we were at one, two, three, and four months ago, and how much progress Hannah has made (and mom too!)  Not only is Hannah a whole new person, she is whole.