Weight Check

All of our babies have been tall and skinny in their first 2 years-around the 75th percentile for height and 25th percentile for weight.  Hannah was fairly big at birth (8 lb 12 oz), but her growth took a serious hit with three hospitalizations and two respiratory viruses before she was six weeks old.  She finally regained her birthweight at six weeks, and was growing fairly steadily for a few weeks.  The goal is to gain about an ounce a day, and Dr. Smith wants her to be at least 11 pounds before doing the myotomy surgery.

On January 12 she was 9 lb 7 oz.  But at her checkup on January 22, she weighed 9 lb 9 oz, which was only 2 ounces in 10 days, and on February 5 she was 9 lb 12 oz. So while she had been growing an ounce a day for a while, she had now only gained 5 ounces in 3 weeks. 😱  At birth she was in the 50th percentile, and now she's in the 5th percentile! This is obviously very concerning.

Hannah has a really hard time whenever we try to increase the amount she gets in her tummy.  She gets really fussy and starts to regurgitate when we go up even 2 mL/hour.  It almost seems like she's in pain.  She gets a really wet cough, and there is the concern that she will aspirate into her lungs; aspiration pneumonia is not uncommon in babies with CA. Whenever we increase by 1 mL, I have to give her an entire day to adjust to the higher volume.  Mind you, 1 mL is a fifth of a TEASPOON!  This is why she has been getting a continuous feed 24 hours a day rather than bolus feeding, which more closely mimics natural eating habits like getting a 3 ounce bottle over a 15-20 minute period every few hours.

He just can't make a normal face!

Last month the doctor and I were working on trying to consolidate Hannah's feeding schedule away from 24 hours a day.  So in mid-January, I stopped Hannah's food pump for one hour a day and increased the volume on the other 23 hours so that she would still get the same total calories per day. I decided to eliminate the 2am hour, hoping she wouldn't even notice.  We did this for 3 1/2 weeks, increasing her hourly volume and adding 1 off-hour each Friday.  We were down to 20 hours a day at 25 mL per hour with breaks at 2am, 8am, 2pm, and 8pm. We did make the mistake of not increasing her daily caloric intake in that time, which is why she stopped gaining weight. So since her weight plateaued, on February 5th we went back to 24 hours a day and increased the volume to 27 mL/hour.  Now her total volume per day is almost 650 mL rather than 500.  Within a week she had already started gaining an ounce a day again. What a relief!

She's such a snuggle bug

This week, Dr. Henderson called me and recommended that I take Hannah to another pediatrician who has more experience with special cases like Hannah's.  Dr. Henderson has been incredibly helpful. First of all, he took me seriously on the Day Everything Hit The Fan (November 28) and got Hannah admitted to the hospital.  Every time I had nursed Hannah and she had turned purple, I got this panicky feeling that something was wrong.  It gave me anxiety and I was starting to dread feeding time because it was so scary for me to see her stop breathing.  At the same time, when she wasn't eating, she was perfectly fine, so I was puzzled and unsure of how seriously I thought it should be addressed.  Surely, she doesn't need to be hospitalized!  The hospital is for babies who are sick, and Hannah wasn't sick.  The first doctor told me it was nothing but reflux, but Dr. Henderson saw the warning signs that something more was wrong and escalated her case.  At the time I thought the hospital was going to be overkill and I was going to be embarrassed that nothing was wrong.  I'm so glad Dr. Henderson took me seriously and followed his instincts.  He very well could have saved her life. Dr. Henderson also does shifts at the hospital where we've been several times and was proactive about getting us the Synagis shot.  He's friendly and personable and has answered all my questions or consulted with other doctors and specialists if he didn't know the answer.  It has been nice to have the continuity of care, but I appreciate that he recognizes our case might be out of his scope. So while it is hard to switch doctors and say goodbye, I think it will be a good move.

We got in to see Dr. Johnson the very next day (yesterday).  I had made an appointment to see him right after New Year's, but had cancelled it in order to keep our continuity with Dr. Henderson.  So Dr. Johnson had already read Hannah's chart and knew all about her.  Right now the primary concern is getting Hannah to grow, and this involves finding the right feeding regimen.  Most normal babies are self-directed in how much food they take in.  They cry when they are hungry and eat until they are full, and it is just right for growing. Oh, how I miss this dynamic!  My baby gets fed constantly, a tiny bit at a time, and I have no way of knowing if she is getting enough or not.  I went to see Dr. Johnson with a list of questions about calories, ideal growth, bowel movements, and transitioning to bolus feeding, and he addressed all my questions before I even asked them!

All the kiddos.  I think they like her.

It was really good to learn the "formula" of how many calories she needs in order to gain weight and catch up: 110 calories per kg of weight. Now I can adjust her daily calories without having to ask a doctor how. I suppose I could have googled it, but I didn't think to. Dr. Johnson also ordered some blood work to check that all her internal systems are working properly and that her nutrition levels are balanced.  With regards to not being able to increase her hourly volume very quickly and without discomfort, he had a couple recommendations.  First, Hannah gets breastmilk with a little formula mixed in for added calories, and he switched us to a new formula that is easier to digest. Secondly, he prescribed a medication, Reglan, that helps the gut digest faster.  Hopefully these two changes will help her stomach empty a little faster and allow us to increase the hourly volume faster. Our first goal is to get to 32 mL an hour for 20 hours a day. The second goal will be to have 2 hours on and 1 hour off throughout the day, which is more like 41 mL/hour for 16 hours, but probably higher because she will weigh more by the time we get to that point.

Third, he ordered an ultrasound to check Hannah's pyloric muscle, at the bottom of her stomach. Babies who have pyloric stenosis have projectile vomiting as the main symptom. But Hannah doesn't ever have a "full" belly, and the cricopharyngeal bar blocks most of her reflux from coming up: she hardly ever spits up at all. So it is possible that she does have pyloric stenosis without that tell-tale symptom, and it would explain why she can't increase volume without significant discomfort. Incidentally, pyloric stenosis is an overly large sphincter muscle, just like her overly enlarged upper esophageal sphincter, and the surgery to correct it is also called a myotomy, a pyloromyotomy. It seems not a coincidence to me if she were to have both. Maybe she has some kind of disorder where her sphincter muscles are too big.  My mom says birth defects come in threes.

I put on pants! Survival mode here.
Celebrating the little things, people...

If she does have pyloric stenosis, she would have immediate surgery to correct it: same day or next day.  Our surgeon, Dr. Smith is hesitant to do Hannah's myotomy until she is bigger because of the risks associated with anesthesia.  But if we were going to be anesthetizing her to do the pyloric correction, couldn't we also do her cricopharyngeal myotomy while we're at it? I asked Dr. Johnson as much and he said yes and said he would call Dr. Schramm in Provo for his help.  I like that he is on the same wavelength as me: he seems to agree that the myotomy is Hannah's best option and had asked why we hadn't done it yet. Well, this was kind of exciting news for me and also a little overwhelming: Here it was 1:00pm on Valentine's day, and my kids are almost home from school.  I'm about to go get an ultrasound that could determine if we have surgery in the next 24-48 hours, surgery that I have been hoping for for months. And also, it would mean another chaotic balancing act while we have a hospital stay. Do I go home and pack a bag just in case I don't go back home? And oh, yeah, I've been trying to potty train Lexie this week (two year olds are so stubborn!).

Unfortunately, the ultrasound was inconclusive.  After trying for the better part of two hours, we were not able to get a good shot of the pyloric area with food movement, partly because the volume in Hannah's stomach is so small, partly because breastmilk is harder to see on an ultrasound, and partly because she had a lot of gas bubbles in her stomach and was really fussy.  (This baby does not burp!) So for a few hours I had an unsettled eagerness and anxiety that we might have imminent surgery, and then a huge let down when we didn't have an answer at all.  Talk about a roller-coaster! The next step will be to do a full study of the lower stomach and duodenum to put to rest or confirm the theory of pyloric stenosis.  We've already had various tests to look at her anatomy, but nothing below the stomach. I'm on pins and needles waiting for a call to go to radiology today, or maybe it won't happen until next week.

In all, I'm glad we have Dr. Johnson and that he has the same concerns as me and some new answers for us.  I'm glad he is up to speed on Hannah's condition and is proactive about testing. Hannah has enough calories and I have a game plan to keep her growing steadily.  And I'm preparing myself that any day could turn out completely different than how it starts.

Electronic Beep

Use an electric pump to extract milk from mom. Use a different electric pump to put that same milk in baby's tummy.  While effective, it is one of the least convenient or efficient ways to feed a baby.  (And so many parts to wash!)

Hannah has had an NG feeding tube for 2 months now-since she was two weeks old.  NG means "nasogastric" and goes in her nostril (naso-), down her throat, and directly into her stomach (-gastric).

Tubing goes through the pump valve and rotor

Starting at the top, we have a disposable "pouch" much like an IV bag, which gets filled periodically with fortified breast milk.  The tubing coming out of the bag passes through a Kangaroo Joey pump, being connected by a valve, going around a rotor, and then out again. Then there is about 6 feet of tubing. This bag and tubing is replaced every 24 hours. The bag is washed out and the tubing "flushed" with hot water every four hours when it gets refilled.  (This process takes at least 5 minutes and cannot be accomplished with one hand.  I have tried.  Its also much harder as a walking zombie at 2am.)

Hannah is sporting the NG tube in a soft purple,
the Kangaroo Joey pump in a black backpack,
and is accessorizing with two sizes of dosing
syringes that complement her tube and port.
She tops off the look with facial tape,
because who wouldn't?

This high-maintenance bag and tubing set is then connected to Hannah's NG tube that is taped to her face and goes into her body.  Her tube is much shorter, and extends out of her nose about 18 inches.  It has a purple push-on cap, and when uncapped, screws onto the end of the longer pump tube. This "port" has several uses. It allows us to change the bag and tubing every day, it allows us to administer medication directly into her NG tube with a matching screw-on syringe, and it allows us to cap and close off the NG tube when she is not getting fed.  We also flush her NG tube with 3 mL of warm water every 4 hours when we refill her bag to prevent her tube from getting clogged.

Unlike the feeding bag and tubing, Hannah's NG tube stays in 2-4 weeks without being removed or replaced.  It goes up into her nostril, at the back of the nasal cavity it turns downward and goes down her esophagus (past her cricopharyngeal bar), through the lower esophageal sphincter, and into her stomach.  The very last inch of this tube has a few openings similar to a soaker hose where the liquid nutrition is deposited in her tummy.

It is very uncomfortable for Hannah while we are putting the tube in, especially trying to "turn the corner" at the back of her nose to make it go downward.  But fortunately, once it's in all the way and we are done taping it to her face, she doesn't mind it at all and quickly goes back to being happy and smiley.  It usually takes me 2-3 tries, but Chris can usually get the tube in on his first try.  It is definitely a two-person job: one person to hold her down and put the tape on, and the other to put the tube in and hold it in place while it gets taped. It only takes about 10 minutes, but it sure gives me anxiety!

"NG Tube Insertion 101" is not a class we took when we became parents, so there was some learning and failing and quite a few tears before we got the hang of it.  It hurts my momma heart to pin a screaming baby down and torture her by putting things in her nose. It's disturbing when the tubing comes out her mouth instead of going down (eww!).  And its scary to realize you might accidentally get the tubing into her lungs rather than her stomach.  The tube has to be inserted the correct length, which depends on the size of the person.  It has to be taped at the right spot and in a way that the tape won't come off.

After we put the tube in and tape it, we have to check to make sure its in her stomach.  Using one of the screw-on syringes on the port end of the NG tube, we pull back slowly to see what comes out: if stomach content comes out, we're golden.  (Sorry! Kinda gross!)  Another way to check is by pushing air into the tube and listening with a stethoscope for a "whoosh" sound in her abdomen.  (Side bar: this whole process is kind of unfair. In the hospital, after an NG tube is inserted, they order an x-ray to make sure it is in the right place. I obviously don't have that luxury!  Why do they expect us to get it right when they have to use an x-ray to check their work?!)

The pump and food pouch go in a convenient little backpack which helps the baby stay portable, but it is still a pain in the neck.  Unless you bring the backpack with you, the baby can only go 6 feet. If you forget to bring the bag and you pull the tubing too far (which I do about once a day), the tubing gets dislodged and the pump beeps annoyingly at you until you turn it off and back on again.  If you pause feeding for some reason and then forget to turn it back on, it beeps at you.  If the tubing gets clogged or pinched, it beeps at you.  If the battery is low, it beeps at you.  If the bag tips over and gets an air bubble in the tubing, it beeps at you. When the bag is empty, it beeps at you.  Hannah sleeps 10 hours straight through the night, but I wake up to an electronic beep every 4 hours in order to refill her feeding bag.  Its so hard to get out of bed for an electronic beep!  I have actually fallen asleep standing up waiting for the bottle warmer...

Its easy to get tangled up her in tubing.  Its tricky to get her in her car seat, and her car seat in the car without pinching or pulling the tubing (or closing the car door on it).  Its impossible to wash and refill the bag while holding a screaming baby.  In short, the NG tube gives me anxiety, the pump is annoying, and the bag is high maintenance.  But I am so glad they exist.  They feed my baby and are helping her grow!  Without them, she would not have lived, so I am grateful for this work-around until Hannah can get her surgery and can swallow again. I would much rather feed my baby the regular way, but for now I'm glad I can even feed her at all.

Happy Feeding Tube Awareness Week!

(OK, seriously, I didn't know that there was a feeding tube awareness week, and I was already working on this post when I learned it was the second week of February.  Happy coincidence!)

Synagis run-around

Heinz needs to get some medication to save his wife's life. The pharmacist won't sell it for less than $2000 because he wants to make a profit off of his discovery. Heinz only has $1000 and the pharmacist won't budge, even though he knows the wife is dying. The question is if Heinz should steal the medication and why or why not.  This hypothetical moral dilemma is multi-faceted with myriad solutions, none of them right or wrong.

I have felt an awful lot like Heinz the past few weeks trying to get the Synagis shot for Hannah.  Synagis is an RSV prophylactic shot that is given to medically fragile babies during flu season.  Hannah qualifies for the medication because she has "a congenital anomaly that impairs the ability to clear secretions from the upper airway because of ineffective cough," and she is "at risk for a prolonged hospitalization related to lower respiratory tract infection."  Hannah was already hospitalized for influenza and needed to be on oxygen for 3 weeks afterward. I'm not sure how much this medication actually costs, but I've been told $2000 and I've been told $15,000.  Either way, the insurance company recognizes that the preventative medication is cheaper than another hospitalization.

In clinical trials, 10% of placebo recipients were hospitalized for RSV, and less than 5% of Synagis recipients were hospitalized for RSV, meaning that the medication cuts her chances of getting RSV by more than half.

This is on our front door.

We started this process on January 12 and it has been a total circus trying to get this prescription filled. We've had an especially dangerous RSV season, and Hannah's growth already took a hit with 2 respiratory viruses in a row.  What if she were to get sick while we were waiting?  We have hardly left the house at all, and I have been "screening" every visitor that comes over.  I've purposefully kept Lexie home from nursery at church, and opted not to take her to the mall or rec center or McDonald's play place even though she desperately needs to get out of the house and have a change of scenery.  Lexie and I are driving each other bananas. 

I had no idea how hard it would be to get this shot, and I have been stir-crazy for three weeks! Because its so expensive, there are quite a few hoops to jump through. Insurance has to have documentation from the physician of why the medication is necessary, and the pharmacy has to have prior-authorization information from insurance before they can proceed with dispensing.  Everything has to line up perfectly, all at once, in the right order, and not on a Friday because you can't overnight ship a refrigerated medication on a weekend. There's no checklist for worried parents to use to streamline this process.

It took an entire week of waiting before we even knew we had the wrong pharmacy, and then another week for the insurance company to catch up.  If I hadn't been making phone calls to insurance, doctor, and especially pharmacy on an daily basis, it might have never happened.

We started out on the wrong track, but here's a sort of check-list of how to get started and how our particular pharmacy really convoluted this process that I shall call:

THE SYNAGIS RUN-AROUND

First of all, make sure you know which "specialty" pharmacy your insurance company prefers to use for fancy medications like this.  Have the doctor send the prescription to this pharmacy and to the insurance company. It will still take the pharmacy a full week before they actually know who you are when you call. Maybe call the pharmacy every day and ask the "status" of your prescription. They will tell you they are waiting for information from the insurance company.  Meanwhile, the insurance company will automatically deny the prescription, and will say they need more information from the doctor about why the medication is necessary. 

Call the insurance company.  It might take them several days to realize that they need more information from the doctor.  They will say that they sent, or will be sending, a letter or fax to the doctors office asking for patient chart information. Call the doctors office and tell them to look for the letter from the insurance company and respond with the requested documentation. Then call insurance back to see if they got the info and ask them how long the review process will take before the medication can be authorized. They will probably say 2-3 days.  But it might help if you call them every day to ask the "status".  Also ask them what the next step will be.

Once the insurance company finally has the documentation they need, they will write a letter to the prescribing physician and it will have a "prior-authorization" number.  As soon as the insurance company has approved the medication, make sure they send this information to the physician. Then the doctor's office has to call the pharmacy and give them the prior-authorization information.  I recommend calling the the doctor's office to make sure they got it and remind them to call the pharmacy.  I asked insurance why they can't call or send this information straight to the pharmacy, and they said it has to do with privacy laws.

Side-bar: Every time I spoke with someone from the pharmacy about each step, I asked "how long should I expect that to take?" and usually they said 24-48 hours.  I personally think that is ridiculous. With this many steps and hoops to jump through, that is way too long.  If you had a regular prescription and a local pharmacy or if you were in the hospital, your prescription would be filled the very same day. I understand that special insurance authorization makes this process longer, but there is no reason it should take more than one week, TOPS! 

(We've already been working on this for 2 weeks at this point).  Now the pharmacy will the call the parent for "permission to ship" the medication.  I've already implied that his pharmacy is incredibly incompetent; when they called the parent for "permission to ship" they called and left a voicemail for my mother...who lives in Chicago.  Ummmm....okay?  How did they even get her number? I'm pretty sure she is listed as an emergency contact for us at the doctor's office, but I did not give that information to the pharmacy, so why would they have gotten it from the doctor?  *scratches head*

So, rather than calling me, I called them and asked, "What's the status?" and they told me they had already called the parent and left a message. "Uhhh, no you didn't..." says me.  I eagerly gave my permission over the phone.  They even asked me, "What day do you need it by?" and I legit said, "I needed it a week and a half ago." (So if I hadn't called them that day to ask the status, would the whole process have stalled until my mom-who was travelling and out of range-checked her voicemail?)  I asked them why they needed to call the parent for permission to ship. Of course you have my permission to ship! They said that sometimes the parent has changed their mind, or the child isn't going to get the shot after all because he or she already has RSV (GEE! I WONDER WHY!?!).

Then the pharmacy called the doctor AGAIN to set up the shipment. This means getting the address and business hours. The medication is refrigerated, so it has to ship overnight and be received the next day, which obviously can't be a weekend. They will also get the patient's weight, since the medication dosage is determined by weight. (Don't you think this process could be streamlined if all this information would have been collected at the very first encounter??)  Now, if the pharmacy calls the doctor's office and leaves a message, the ball is now in the receptionist's court again and the office has to call them back again... Usually, I would call the pharmacy and ask today's status and find out that they left a message, then I'd have to call the doctor's office and ask them to please return the message. Also, if the patient's weight has changed, the doctor has to send a new PRESCRIPTION!!! further frustrating the process, because now they have to call the parent and get permission to ship again.  Go ahead and ask me how I know...

Finally, a conference call. I got the pharmacy and a helpful nurse from the doctor's office on the phone at the same time and I didn't hang up until I knew that they had my permission to ship, the doctor's office had given a verbal confirmation of shipping address, business hours, child's weight, and dosing amount, and I was confident that all was in order to ship that day. This was Wednesday, January 31. I was told that the doctor's office would open the package immediately and put it in the fridge, and then call me to bring Hannah in for her shot. I wasn't about to count my chickens though, because I'm sure they could find some other way to screw this up, like shipping it to my house when I'm not home, or my mother's house, or putting the wrong name on the medicine, or some other unknown abomination.  I even called the pharmacy back later that evening to see if they had a tracking number for me, but they didn't yet. 

Proof. That is one hard-earned bandaid!

The next day, I waited anxiously all day for the call, not entirely certain if it would really happen. Finally at 3pm I called the doctors office to see if it had been delivered and they said no.  So I called the pharmacy for a tracking number, and they told me it had been delivered at 9:45 am and that someone named Clark had signed for it. I called the doctor's office again and sure enough, it was in the fridge with Hannah's name on it.  I was there within half an hour, and on Thursday, February 1, a full 3 weeks after the prescription was made, Hannah finally got her Synagis shot.

If every step takes days, even with daily prompting from a proactive parent, I can't imagine how long this would take if I had not been involved.  Each step would have been buried on someone's desk for a week at a time.  It has been completely ridiculous!  When you have a vulnerable baby-and a stray sneeze in her direction could send her to the hospital-you have to be proactive.  You want this medicine ASAP! Not after the spring thaw...  

Here are some tips if you are going through this process, and I hope you have a less incompetent pharmacy: Be as sweet as pie. Say please and thank you. Ask the name of the person you are talking to. Write down all the phone numbers you are calling, what days and times you called each place, who you talked to, and any new information you learned or information you need to get from someone else. You will spend a lot of time on hold; I recommend a hands free headset.  An impassioned monologue and some hearty tears on my behalf helped "escalate" our case. Let them hear that baby crying in the background. Make a friend at the doctor's office who knows the situation and can stay on top of the process with you.  (Thank you Linda!)

I count over 30 phone calls and over 4 hours of phone time (much of the time on hold).  This had better be more smooth next month when we get the second dose!! As my mom put it, when all is said and done, you will have made thousands of dollars per hour when you take into account the value of the medicine and the number of hours spent on the phone trying to get it. 

Lastly, give a big sigh of relief and snuggle that baby. And cover your cough, for crying out loud!

Who says waiting is a game?

So many tubes and still wide-eyed.

Every day is long and the weeks are an exhausted, chaotic blur. My body aches and my neck is tired of holding up my head. Sunshine and fresh air is rare in 20° inversion weather. Winter seems like it will be eternal, flu is a constant threat, we rarely leave the house, two year olds are tiny, manipulative terrorists, and we have serious cabin fever. So it surprised me when I realized it's already been a month since we saw Dr. Smith in Salt Lake!  We had another visit with him this week and have a little bit of a game plan. We're a little disappointed that Hannah's growth slowed down: only 2 ounces in 10 days. At the last few checkups she was gaining an ounce a day with the same number of calories.  Definitely something to bring up to the pediatrician.

Dr. Smith was pleased to hear that we are consolidating Hannah's feeding schedule and that she is tolerating the tube feeding well at a higher volume per hour (now up to 23 ml/hour! Baby steps, people...) She hasn't been spitting up or throwing up, and there is no evidence that she is aspirating to her lungs.  We do keep her elevated except during diaper changes, and she takes zantac to reduce any pain from reflux.

This is what survival mode looks like. Netflix is my babysitter
and she keeps changing her mind about what she watches.
Please don't judge me...

Incidentally, I recently learned that acid reflux medication doesn't actually reduce the reflux, it just makes it less painful. I can tell that Hannah is more fussy when I've missed a dose, and she does cough and sputter more if she is flat on her back for too long.  Also, the narrowing in her esophagus works slightly to her advantage in blocking reflux from coming up. All babies have reflux to some extent because the lower esophageal sphincter (LES) is immature. He said there is no way to know at this point if she has abnormal LES reflux or decreased motility in her esophagus below the CP (cricopharyngeal) bar. We can cross our fingers and hope not! He does not think we need to meet with a GI specialist.

A rare moment of sleeping without
being held. Gorgeous quilt by Aunt Barbara.

Dr. Smith ordered a pulse-oximeter test overnight to see how she does without oxygen. That would certainly simplify things at home to not have a 25 foot lead all the time, or a 20 lb tank whenever we want to leave the house. We'll know within the next few days if she passed. I peeked at the oximeter a few times overnight and I didn't see it get below 89% so I think she'll be fine.

Both her reflux and oxygen have been normal since we've been home from Primary Children's after getting over influenza. When she was sick she definitely needed the oxygen, and she also had more mucus and saliva secretions that made her cough and sputter and regurgitate more. Some days I have to suction white foamy secretions more than others and I get a little worried that she is getting sick again. Fortunately she hasn't had any more red alerts on the Owlet or a temperature for several weeks. That certainly gives us some peace of mind.

Every hospitalist I've talked to gets a grumpy face when I mention the Owlet monitor. The majority consensus of the doctors I've talked to think the Owlet is inaccurate, gives too many false alarms, and creates more parental worry than it alleviates. They are of the opinion that parents should be watching the baby rather than the monitor, and have told me that they very rarely send even NICU babies home with an oxygen monitor. But in the hospital and at home when we are testing her breathing without oxygen, what do they use? An oxygen monitor. I've pointed out that sleeping parents aren't watching their babies all night, so how else would they know the baby had a problem? And they can tell that I am a hands-on parent who doesn't just watch a monitor. The Owlet has legitimately alerted us that our baby needed emergency medical attention that we otherwise would not have sought on more than one occasion. Does everyone need to go out and buy one? No. But I truly think I was divinely inspired to. If you can afford it, or if your infant is medically fragile in any way, I would recommend it.

Snuggles always.

Back to our appointment with Dr. Smith. The game plan right now is to continue consolidating feeds, meet with a feeding therapist (he used Speech Therapist interchangeably) and come back on March 5 for a swallow study. If her esophagus shows improvement, we will try some oral feeds, and if not we will try botox and dilation again. I still had an ugly cry at the thought of the myotomy being off the radar for now, maybe even 2 or 3 months away or longer, but give me a couple of days and I will regroup and muster some more courage from the place where courage comes from but never seems to be in surplus. Courage is like the meal and oil Elijah promised the widow woman that never gets empty and never gets full. There is just enough for right now.

Introductions

Big eyes!

Hi! I'm Hannah. I'm 2 months old!  I was born the day before Thanksgiving. I have a crazy family and some crazy sisters and a crazy brother. They are so LOUD but I'm used to the noise. During my naps I sleep better when it's noisy. Sometimes they get along and sometimes they don't, but they all seem to love me and want to hold me and protect me. I like it when they stroke my head. They give me silly nicknames like Hannah Bear, Sugar Plum, and even Miss Hannigan. Daddy calls me weird things like Miss Dump-a-Load.

My daddy is really silly.

Every once in a while those crazy parents stick this thing in my nose and all the way down.  It's awful!  I scream and scream and eventually they stop. Then I don't mind it anymore. I have a feeding tube because when I try to swallow, it doesn't go down right, but it'll get fixed soon and then I'll be as good as new.  For now my tube puts milk in my belly and I never feel hungry. I probably don't even know what hungry is! Because of my tube I hardly ever spit up.

My big sister Audrey

I went to the hospital a bunch of times, and I rode in an ambulance.  At the hospital they poked me with sharp things a lot and made me cry. I especially didn't like it when they sucked boogers out of my nose, but it did help me breathe better. There were a lot of noises and beeps but I got used to it.  I much prefer being at home.

I really like to be swaddled nice and snug, and I love my binky.  Sometimes my mom dips my binky in her magic milk and I can taste it. It is so yummy!  I wish I could have more.

I can sleep alllllllll night long. My mommy brings me to her warm dark room and puts me in my cradle all bundled and then turns on the soothing vibration that helps me fall sound asleep. Sometimes she puts a bean bag on me to make me think there is someone putting their hand gently on my chest. Then I go to sleep for 8 hours and I don't mind that its quiet.

My big brother Samuel.

I really enjoy my bath. It is warm. When I get out I'm cold at first but then I feel so warm and sleepy and safe after I get dressed in fresh jammies. I also like to poop and burp and be held. I ESPECIALLY like to be held. It is warm and comforting to be in someones arms and hear their heart beat and their breathing. It makes me feel safe. Sometimes all those other crazy people all want to hold me at once and it gets a little too crowded. I like to be around my family during the day. When they are eating at the table I like to sit in my vibrating bouncer chair nearby or sit on someone's lap so I can be near all the action. Sometimes my mommy holds me like a football while she eats and that's cool.

I don't like being in my car seat. Its boring and nobody holds me and it's not warm. There's nothing to see or do.

My big sister Lexie

My latest trick is smiling and watching other people's mouths. They get really happy when I smile at them and I get happy when they smile at me. I can almost hold up my head, but it's hard work. There's so much to see that I open my eyes really wide to take it all in, and everybody likes that and thinks I'm cute. I know that I am loved.

Whew!  Now I'm exhausted from all this chatting. Now I get to go to sleep.  See you next time!

My biggest sister Leah!