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!