New vocabulary words

The second hospital stay lasted 5 days and was also really boring.  I tried almost everything on the room service menu. More than once.  I watched 2 entire seasons of The Big Bang Theory.  I hemmed a quilt for a customer.  Outside, it went from fall to winter.  The kids came to visit just about every night and enjoyed the playroom for family visitors.  My mom held down the fort at home and cleaned and did errands.  They put up a Christmas Tree. My dad came on Wednesday morning and mom flew home on Wednesday night, effectively taking turns so that someone would still be able to help us manage our kids and house amidst our continuing crisis. Chris went to work.  Hannah lost weight.

The first bit of progress was that the MRI was normal.  That was a relief.  Dr. Schramm reported that in her scope, he found:

1. The esophagus was closed much like the first time.
2. The airway was particularly narrow.
3. She had a tracheolaryngeal deep groove. Not quite a cleft, but deep enough to take note, but unclear on whether it was relevant.
4. One of her vocal chords looked sluggish. This could be a function of being anesthetized, or it could indicate another abnormality.
5. She had some secretions in her lungs, indicating some aspiration of saliva or mucous.

Dr. Schramm wanted to give the botox a good 2-3 weeks to be fully effective before deciding if it had failed or not.  It was apparent that the dilation had been effective for about a day.  At this point it was important to figure out how to feed Hannah at an appropriate rate for growth, but in a way that would not cause problems. She got an NG tube (down the nose) for feeding. Bolus feeding means a bunch of food at once, and resembles how people actually eat: having a meal and getting full and then waiting until you get hungry again.  For Hannah that would look like getting a 75 mL bottle (through the tube) over the course of half and hour, and then again in 3 or 4 hours.  It gives the stomach the chance to stretch and feel full and feel empty.  You know, regular hunger cues.   But unfortunately the bolus feed made her choke and regurgitate through her mouth and nose on account of the reflux.  Also the feeding tube itself keeps the esophagus open somewhat creating a conduit for things to come back up.

The alternatives to bolus feeding include an NJ tube, which bypasses the stomach and puts food directly into her upper intestine, or a continuous feed with the NG tube.  I want Hannah to be able to have food in her tummy and not have to always be hungry, so I was a big fan of the second option. It was decided that the best way to get her the needed calories was to use a smaller volume of breastmilk and mix in a little bit of powdered formula to keep the calories high enough. The final goal was to see Hannah gain some weight before we could go home. At this point she was almost a full pound below her birthweight (her birthweight was 8 lbs 12 oz).

At one point an Occupational Therapist from the NICU stopped in to see if Hannah's swallow also had a behavioral component that could benefit from swallowing therapy, and if trying different thicknesses and nipple flows would affect her differently. The OT Deanna would prove to be an excellent advocate and source for us.

I don't know why it took us 5 days to get this much figured out and I can't even remember what progress we made each day.  Nevertheless on Thursday the 7th we went home.  I missed the kids choir concert by only a couple hours, which was a major disappointment to me.  I got home around 6pm and had to wait for home healthcare to come and bring me a feeding pump and show me how to nourish my now 15 day old baby through a tube in her nose.



Lexie loved the family play room at the hospital.

My instructions were to follow up with the pediatrician and make sure Hannah was gaining weight.  I also had to look forward to another swallow study and then an appointment with Dr. Schramm in a week and a half.  Somehow I got it in my brain that that time frame was a point at which things could maybe go back to normal, and therefore we'd only have the feeding tube for a couple weeks.  How do I get these crazy ideas in my head, anyway?

The Walk of Shame

When we went home on Friday, I thought Hannah was all better.  She was able to nurse normally and it was great! At this point, I had somewhat of an emotional melt-down.  I was so relieved that she was ok and that we had identified the problem, yet processing in hindsight the horrifying reality of what could have been. Seeing that the immediate crisis was past, I finally had the luxury of ugly crying and releasing all that pent-up fear, worry, relief, and exhaustion. At the same time I suspected that maybe we weren't out of the woods and was afraid that we'd have to go back to the hospital, with all its uncertainty, waiting, and emotional exhaustion.

By Saturday evening, I realized that not much had changed from Hannah's initial condition.  While I could see some improvement in her ability to swallow right away, it hadn't lasted for more than a day or so.  She still had trouble catching up on breathing while I was nursing her.  Her Owlet baby monitor would signal a red alert that her oxygen was low while I was holding her in my arms. The low oxygen parameter for the Owlet is fixed at 80%, which is much lower than the hospital's 86.  

Overnight, Chris and I decided to try feeding her by bottle with a super slow-flow nipple so that she would not get overwhelmed by a high volume or overactive let-down, and we could moderate how much and how quickly she was eating.  He would give her the bottle for 5 seconds, and then we would wait 1-2 minutes for her to swallow, breathe and recover, then start again.  Just like before, she would try swallowing and stop breathing and start losing color.   We came home Friday with the ability to feed Hannah orally, but by Saturday, I could tell that it was not working anymore.  Somehow the dilation and botox procedures were not effective. She would need some kind of intervention for her to be able to eat without aspirating or she would starve and fail to thrive, and without going back to the hospital, there was no way to get that need addressed immediately.

What a fabulous view

So Sunday morning at 7am Chris dropped us off at the Emergency room after being home less than 48 hours.  I was very disappointed, but I knew that we needed to go back and keep working on a solution for Hannah. That walk down the hallway back into the peds ward was disappointing: I had just been there days before, and I now knew these people, had just said goodbye to them, and here we were again, right back where we started from.

Being retired, my parents have the luxury of being able to hop on a plane at a moment's notice, which my Mom did.  She even went to church first and fulfilled her obligations there before going to the airport, and was in our hospital room by dinner time.  I'm so glad she was able to come back and be "me" at home while I was at the hospital with Hannah.

Dr. Schramm stopped in to check on Hannah. He said he was disappointed to get the text that we were back, but not surprised.  One of the things we had learned along the way was that conditions like Hannah's are sometimes associated with an underlying neurological condition called a Chiari malformation. Babies under 30 days old have to be kept in the hospital for observation for 12 hours following an MRI, so we initially had planned to wait for her to be 31 days old.  Now that we were back anyway, it was the logical next step.

Monday turned out to be one of those wait-all-day-for-something-to-happen kind of days.  The MRI schedule was booked solid plus had 4 emergent cases.  Because of her size and age, Hannah would have to be fully anesthetized for it, and since she would be put under, Dr. Schramm decided to do another esophageal scope.  So we had to wait for MRI, anesthesia, and OR all at once, and of course she had to have an empty stomach while we waited.  We had no idea if or when all these things would align perfectly.  Sometime around 2pm some nurses came into our room and said, "It's time to go right now."  That's why I never left her bedside: wait all day, and then not even have time to go to the bathroom before heading to surgery again.

Trying out oxygen while she sleeps.

Meanwhile, back on the ranch...

The day Hannah was born, Lexie (2 1/2 years old) had full-blown croup, with a 103 degree fever, diarrhea, cough, and lethargy.  My mom took her to the pediatrician and Lexie got a steroid treatment, which started working almost immediately.  Regardless, she was still symptomatic when Hannah and I came home from the hospital 2 days later. It added another dimension to having a newborn at home: the risk of her getting the rest of us sick.

My mom had been with us for a week and a half and had gone home (to Chicago) on Monday.  On Tuesday, the day everything hit the fan, Lexie still had a fever and diarrhea, Audrey was starting to cough, and Leah (11 years old, 6th grade) had stayed home from school with a high fever and cough.  I always feel so bad leaving her home alone when she's sick, because she gets lonely and bored, and I would rather be home with her to keep her from getting too discouraged.  She is the most conscientious tween and doesn't want to let her teacher down or miss choir practice or get behind on school work.  So she stayed home because in my professional opinion as her Mother, she was too sick to go to school, but I was running all over creation with Sandy getting medical attention for Hannah.  By afternoon when I had decided to see another doctor, I called Chris and told him it was time for him to come home early, and arranged for someone to stay home with Lexie until he could get back, which would be about 45 minutes.

By Wednesday I was living and sleeping and showering at the hospital.  I was afraid to leave and miss something important.  We were in full on crisis mode, and so many friends and loved ones wanted to help, but I didn't know what I needed.

Fortunately Chris was able to take a sick day on Wednesday to stay home with Lexie.  On Thursday he had work meetings he couldn't miss and I had to coordinate people to help get my kids the right places at the right time.  This is where I got to call in all those proffers for help.  Chris got the kids out the door to school, dropped off Lexie at a friends house, and went to work.  Leah was again home sick and I didn't want her to be home alone, but I also didn't want her to get my friend's kids sick.  I rallied friends to check in on her throughout the day, and they came through for us with flying colors. A friend picked up milk and pizzas and came over to have lunch with her. Others dropped in to check or keep her company.  Leah and Samuel had a concert the following day, and I recruited one friend to finish making Leah's black skirt, and another friend to pick up some black concert pants and socks for Samuel at Kohl's.  All week friends and ward members showed up with gifts and dinners and rides for our family.   I think all our friends now know our garage door code! 

There is no way we could have met all our obligations without the outpouring of love and support from our friends and church community, which I hope any church community could provide, regardless of denomination.  We are Mormon, and each family has Priesthood brothers and Relief Society sisters assigned to watch over and provide spiritual support and fellowship. Our ward (congregation) jumped into swift action to provide the compassionate service we needed.

On Friday, Leah was again too sick to go to school and missed her concert anyway.  She was especially discouraged because the next day, Saturday was her birthday. No one wants to be sick on their birthday!  I knew I absolutely did not have the time or mental energy to plan a Harry Potter birthday party, and so I asked my Relief Society President, "Remember how you said I could ask you to help with anything I needed?  Well, I need you to plan a Harry Potter birthday party."  She and another sister came through for me and started making arrangements for a party the following week.

For the second Friday in a row, Hannah and I came home from the hospital in time for lunch.  Saturday was Leah's 12th birthday and we got to be together as a family. We went to an art museum where Leah's work was on display, then went out for pizza. Everything felt almost normal, but I was leery that Hannah was really not out of the woods yet.

On being in the hospital

Part 3.5

One thing I learned right away about the hospital experience is that everything takes forever, and "soon" means any time in the next 3 hours. Or it could be in 5 minutes.  "The doctors and residents will be rounding soon" means between 9am and noon, and "you're next" might still be in 45 minutes.  Waiting for a procedure takes all morning, and waiting for the results takes all afternoon. Leaving for surgery will happen 2 hours after the scheduled time. And if you're waiting to take that shower or hit up the cafeteria, something will happen the moment you step out of the room. 

As a parent, you don't want to miss anything happening or the chance to ask questions when the doctor does pop in. It makes you feel somewhat paralyzed. The inability to leave, change gears, even take a nap or take 15 minutes to pump without someone walking in.

My constant view

For me, feeling helpless and worried sick about my child put me in such a funk that I didn't want to do anything at all. I didn't feel like reading.  I didn't feel like sleeping.  I didn't feel like playing a game on my phone.  I didn't feel like watching TV.  I didn't even think to eat or feel hungry.  Nothing.  And with time and progress crawling at a snail's pace, it was SO BORING.

Also, it was hard not to look around and see dollar signs piling up on every piece of equipment, every morsel of food or medication, every disposable plastic thing. Every time the nurses scanned something before using it or administering it, I knew it was getting added to our bill.  And what is the base room rate at this B&B going to turn out to be anyway?  Try not to think about it, Jenny.  Does it matter how much it costs?  Does it matter if I will ever be able to pay it off? No.  It doesn't.  Does Hannah matter?  Yes. She does.

My experience was to pump every 4 hours and then wash my pump supplies.  The nurses brought me drinks or snacks.  I ordered 3 meals a day, but they took 45 minutes so I had to plan ahead before I actually felt hungry, and then sometimes my tray would come and I wouldn't even have an appetite to eat it for an hour or two.  I gave the nurses my dirty dishes.  I exchanged pleasantries with the housekeeping staff when they emptied my trash.  I surfed the TV channels for something better than Family Feud.  I held the baby and got tangled in her IV, feeding tube, and oximeter cords.  I watched the baby's heart rate and oxygen levels.  Then I gave the nurses my dirty dishes and started all over again.  I perked up whenever a nurse came in for vitals or a doctor stopped in to give me a 5 minute update on the progress for the day's goals (of which we would likely accomplish only one or two because everything takes so dang long).  The nurses were fun to talk to.  We often chatted about regular stuff, including McDreamy vs. McSteamy. (even though Grey's doesn't remotely resemble actual medicine, every nurse is privy to this debate and has an opinion.)  

Each step of the way I met professionals whose whole days were spent doing just one step of this process: taking meal orders over the phone, delivering meal trays, sweeping our room, escorting hospital beds or cribs from their room to the surgical wing, processing patients for surgery in the pre-op holding room, updating family members in the waiting room, guarding the door to the pediatric wing, and so on.  And many more processes I was not even aware of.  

Nurses came and went on 12 hour shifts, reporting for their work day and then going home.  Everyone has a very specific job and they only encountered Hannah and me for a brief moment, and we became a short-lived blip on their dutiful work-day.  Because its a day at work.  And everyone I encountered, regardless of their role, was genuinely concerned for my child's wellbeing and recovery.  I'm incredibly grateful for all the well-oiled cogs that make up our modern, first-world hospital system.  I may only cross paths with them briefly, and some of them play smaller roles than others, but they are all essential and important. 

This is nothing like Grey's Anatomy

On Thursday the surgeon suggested doing the balloon dilation and the botox injections together, which I had also considered.

The nurses turned off the baby's feeding tube some time in the middle of the night so that she would have an empty tummy for anesthesia and surgery. Poor little one. She might have been on an IV for nutrients and hydration, but that doesn't do much for an empty tummy. Hannah was surprisingly peaceful nonetheless. She certainly loved the binky and being tightly wrapped.

Super Scary Form

Surgery was scheduled for 1pm. So naturally at 3pm we finally got started. Wheeling a ginormous crib and IV pole for an itty bitty 8 day old baby down the hallways and elevators to surgery was truly surreal and foreign. First we went to "holding" and signed all the Scary Papers and met the anesthesiologist. Then she was wheeled one direction and I had to go the other direction.  The waiting room had a screen showing patient number and surgery status...kind of like waiting for a flight to arrive.

I'm so grateful to my visiting teacher and friend Kari who came with me and sat with me during surgery so that I would not be alone. I was a ball of nerves.  It was refreshing to talk to someone that wasn't a doctor or nurse, and to remember that it was still just a Thursday and that real life was still swirling all around outside of the hospital.

Esophagus before and after dilation.
Top picture shows intubation tube going down trachea.
Cricopharyngeal muscle is below the esophageal opening.

The official name of Hannah's surgery was "esophagoscapy with balloon dilation and botox injections."  The surgery took less than an hour and Hannah seemed much the same as before, albeit very sleepy. (Her cry sounded a little different afterward too...less like a screechy, wounded velociraptor and more like a newborn, but that could be completely unrelated to surgery).  Dr. Schramm gave me some pictures of the procedure and said "Here are the most expensive baby pictures you'll ever have." 

I was told that as soon as she was able to nurse successfully twice we could go home. And Hannah nursed like a champ, as if we hadn't missed a single step.  Yay!  Hannah was all better! We went home Friday before lunch.  It turns out I was probably a little overeager to go home after 3 days in the hospital, because we wouldn't be home for very long!