3 a.m. Good Morning

Tessie kicked off our day at three a.m. when she appeared at the door of my bedroom wearing bunny ears and hopping up and down excitedly. She had already been up for several hours around midnight with Paul, so I understood upon hearing the lights click on and hearing her tiny footsteps padding across her room on her way to our door that it was my turn to try to get the tiny troublemaker back to sleep.

But really, I know that I cannot complain in any way about Tessie's sleep habits. 

She was two weeks old when she started sleeping through the night every night.

And I don't mean six hours. I mean 12 hours if I didn't set alarm to wake her to eat, which we discovered because I assumed, being a newborn she would just awake on her own like all our others had.

Having had an older sister who didn't sleep more than an hour at a time for the first 18 months of her life I knew what a blessing this was.

But now at 3 years old, Tessie has a mind of her own.

She has big ideas.

And sometimes that involves waking up at 3 am to play with her ponies while wearing bunny ears in the playroom and yelling for mom to come join her.

Tessie is, so far, the least verbal of all of our kids as a three year old.

She has less than twenty words, which means that she says less than Maggie said at the same age.

But in the last month she has begun saying more and more, at what seems to be a rapidly accelerating rate. This morning she threw herself on the floor of the car when I was trying to get her into her car seat and shouted "Sad! Sad! Sad!" in a tiny perfect voice because she wanted to be given a chance to pick up a toy cell phone before settling peacefully into her seat.

I scooped her up and kissed her about thirty times, while Maggie said "Tessie alert!" (something my phone says when the car stops to remind me that she's there) and then together we headed to her school where she twirled around at least a half dozen times on the way to the front door, wearing her full sized backpack which looks enormous on her tiny frame.

Those early nights when she slept so deeply were likely because she was having many central apneas and hypopneas a night and it's scary to think that high CO2 levels are probably why she slept 20+ hours a day as a 6 month old.

Which is why now, when she wakes up, I sometimes find myself thinking "this was how it was supposed to be" as I try to convince her to go back to sleep, while also being very grateful that she survived those early months when we didn't know what was going on.

Tessie has gone from dozens of central apneas a nights and hundreds of hypopneas, to a few apneas a week at the moment. We now have multiple nights in a row where her alarm doesn't make a sound. It seems that she really may be outgrowing it (and interestingly it seems to me that as they've decreased her other skills have increased... maybe because she's less tired?).

And for that I am definitely willing to trade some sleepless nights spent convincing her that her ponies need to rest because they have an early morning that will be arriving very soon, and so do we.

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Tessie's Sleep Study Results and A Name Change

I mentioned a few blogs back that I was going to change the blogs Facebook name, because I was trying to make everything match.

In the past I had changed the name and it had been a simple process.

But apparently times have changed.

I went to the about section of my Facebook page and put in the request, asking that it be changed to "Someday I'll Sleep."

Within five seconds it came back and said that it was denied. "Someday I'll Sleep" Facebook informed me, appeared to be a dishonest or misleading name.

"I know, I know, no ones ever going to sleep around here. "I muttered to myself, and then I filed an appeal, explaining that it was already the name of my Youtube channel which I had been using for nearly a year and that it just seems to fit what I write about more appropriately.

The appeal came back denied. Twice.

Thus I began to learn about changing Facebook page names in this day and age and the gradual process of changing the name piece by piece so that the change wasn't too radical. The fact that "I" was in it was also a red flag.

As it stands today it's finally "Someday Sleep Autism Blogs" and I'm not sure I'll ever be able to slip that "I'll" in there.

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In the meantime, I headed back to the children's hospital this weekend, for the thing I dread above all other children's hospital visits, a sleep study with Tessie. 

We got the call Friday afternoon, asking if we wanted to give up our December mid-week visit to come the next day, and I immediately said yes, we could find a way to make that work. 

"No, thank you, I don't need instructions. We've done this... I don't know how many times. A lot. Thank you. 7:30. We'll be there!" 

So we made the eighty mile drive, in the ice and cold and trudged across the bridge to the hospital, where Tessie attempted to lay siege to the enormous Christmas tree that they had placed in the middle of the play area, along with all the other toddlers who all seemed to think it was too beautiful not to touch. 

She realized early on that she was now big enough to make the rotating door spin, so she kept swinging by the front of the hospital, trying to make a break for it, while I scooped her up and brought her back to the place where we were waiting for the sleep study techs to come and get us, which was of course, next to the tree with all its temptations. 

Then it was finally time to head back to the sleep clinic and we were tucked into our own little room. I turned on Moana, and pulled out a tiny soft mermaid ornament with a sequined tail that she'd decided she loved at Target, and the process of hooking her up to all the wires began. 

She screamed when they put the oximeter on her toe, like she hasn't worn an oximeter since she was six months old, for the past two years of her life, and it was a bumpy road from there, with moments of calm, and hysteria mixed in. 

The good thing was that she seemed to understand a lot of what I was saying. When I told her how good she was doing she calmed down a little. And the mermaid's sequined tail calmed her down even more. When I explained that she needed to keep the nasal cannula in she actually listened this time, after a few moments of tears, which was entirely unexpected. 

In the middle of the night she woke up, upset about the nasal cannula again, and this time stuffy after crying about it. 

"You can breath through your mouth Tessie." She shook her head no at me. 

"Yes you can. If you take that thumb out you can." She shook her head no, twice more.

I was elated at the response to my words, that she had apparently understood and in a few more moments she drifted back to sleep. That was amazing receptive language for her to understand.

All day Sunday and Monday I waited for a call.

If the study had been really bad I knew it would come fast. Maybe not on Sunday, I thought, but surely on Monday.

When I hadn't heard anything by five on Monday, I figured that I would hear something when a respiratory therapist got around to calling me in a week or so. 

And that was why, the next day, as I was about to pull into the parking garage at our doctor's office with Maggie, I was surprised when I picked up my phone and I heard Tessie's pulmonologist on the other end of the line.

I thanked her for calling personally and we chatted for a moment about the weather. Monday had been very busy in the office with lots of very sick kids, after the holiday and with the weather, she said. Only desperate people would go out, in that weather. She had meant to call but hadn't been able to. 

Uh oh. 

This sleep study had been different from the last one. In good news Tessie does not have congenital central hypoventilation syndrome, the condition that the gene mutation that she had might cause. 

In other news, this sleep study painted a different picture than the last sleep study and did put her over the index back into qualifying for a monitor again (although she has somehow miraculously never lost hers). Her desats, which were below 89 for more than a minute, also now qualify her to be back on oxygen.

The first part didn't surprise me. It was what we'd been hoping and praying for. The second part did. 

I thanked her several times for calling and took Maggie in to her appointment trying to brainstorm creative ways to convince Tessie that wearing a nasal cannula every night from that point forward wasn't some horrible torture. 

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The medical supply company brought an oxygen tank this time instead of a concentrator. 

"She's on such a small amount tanks will work," the man explained. "And we'll just switch them out."

Yesterday after her first night back on oxygen she was extremely vocal at therapy, which is what we saw the last time she was on oxygen. When she woke up in the morning she started singing along with the PJ Masks song and said "day" in a perfect clear little voice. 

It was a brand new word.

And they're going to try to work with her at school on wearing her nasal cannula to see if they can convince her that it's a positive experience.

If anyone can do it, they can.

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And that is the latest in the goings on with baby Tess.

It is always an adventure with her. 

I did make two videos. 

The first is a lot of footage of her having a blast in the children's area of the hospital while I explain what our time there was like:

And the second is a more detailed description of the results: 

One Sick Baby

These past couple weeks were not quite how I pictured them.

The kids were supposed to be in school, but that hasn't quite worked out the way it was supposed to, because first Patrick had that horrible case of croup that week, and just as he totally recovered well enough to go to school (on James' first day of preschool ever) Tessie came home from school, took a nap, and woke up with that same horribly sounding cough and I knew that we were in for a rough ride.

I snapped these on Sunday... the day before she started to cough.

Actually I really hoped that we weren't.

With Tessie illness can be hit and miss. I knew she might surprise us all and that she might get sick and it might mean absolutely nothing for her oxygen levels. It has happened before. And when it happens it's a little shocking.

Or she can get sick and it can go in the predictable way, where she has oxygen desats and apneas all night long.

I never know what Tessie being sick might mean. There seems to be no rhyme or reason to her apneas at all.

This time it was somewhere in the middle. It wasn't too bad, but it wasn't good either, until Wednesday morning when her oxygen levels tanked and she dipped down into the seventies for five minutes, of course after Paul left for work. I got out of the shower and rushed over to find both her Owlet and her medical monitor beeping furiously at me, in agreement that her oxygen levels were somewhere between 76 and 78 percent as she slept on wheezily.

As she woke up the levels slowly rose back up over about five minutes until she hit ninety. I turned off the owlet so only one machine could sound off at me.

I waited to call her doctor, remembering how the PICU doctors had told me that they had kids who were in the seventies for a month at a time and how while it's not ideal it's not "that big a deal" for it to happen for five minutes at a time.

I explained to the receptionist who answered what had happened and asked if there was a nurse nearby because in the past sometimes the various doctors who had seen her had simply said that "sometimes this sort of thing happens when apnea babies get sick" so I wasn't really even certain that they would want to see her.

When she was awake she was sort of wheezy, but other than she didn't seem all that sick when she was awake.  I took her temperature and it was normal.

"With those numbers I'm sure he's going to want to see her. Hold on. He's here. I'm going to talk to him and I'll be right back." I held and when she came back she said that she had told him that the numbers were only for a couple of minutes, not five and he'd said to take her straight to the ER right now to get checked out.

"You're sure he didn't say come in to the office so he can listen to her lungs?" I asked hopefully.

"No, he definitely said ER would be better, with those levels." She reassured me.

I sighed and hung up and scooped her out of her up and buckled her into her car seat and we headed in to town, where her oxygen levels were perfect because she was awake, and her lungs are never the problem.

The ER doctor said that it sounded like it was all upper respiratory and that she thought that the low oxygen levels were actually probably from her throat swelling this time and that he desats were not entirely apnea based, so that it wasn't entirely a bad idea to come in, and they gave her a steroid medication, and after that we headed back home, where Tess spent the afternoon and night soundly asleep, without any apneas or desats, thank goodness.

Yesterday she was doing better and today her cough, when she coughs at all, just sound s like a normal little cough and she's back to her curious little self.

And I'm really hoping that next week I don't have any sick kids in the house. Or sick grown ups.

What a week.



And from earlier this week with his super bad cough...



And just because this was such a fun day!

A Trip to the PICU

This weekend was not the weekend that I expected.

I imagine a lot of us are feeling that way about this entire week, this entire month maybe. 

I keep thinking that I have to say something about all of that, as soon as I catch my breath from all of this. If I ever catch my breath from all of this. 

I'm hoping to catch my breath from all of this "real life stuff" sometime next week when school starts and suddenly my house is very quiet for at least three hours a day, when five people of varying small sizes are at school. 

But between all this gene stuff, which has thrown me off more than I can say, and a weekend spent partially in the pediatric intensive care unit, I have very few words left for anything beyond my small sphere. 

Tessie has decided that breathing all that much is not all the important to her and so Paul and I spent a great deal of the weekend encouraging her to do more breathing, or to breath more deeply, or to just wake up.

She is not a fan of waking when she's asleep, which even the intensive care doctors discovered when a blood test did not wake her and prying her eyes open and shining lights in them did not wake her.

This toddler can sleep through just about anything.

Oxygen desats into the 70s (and later below 70) is what landed her in the PICU for observation. It was good that we went though because I was able to ask the team there during rounds lots and lots of questions about exactly how to handle it when it happens again.

And when it happened again, happened to be the next day, when she turned blue from that 69% desat ( I did talk to her doctor and he did talk to the PICU and they decided that we'd handled it and that she didn't need to come back in...although I was certainly ready to pile her back into the care when I saw she'd gone below 70%).

And of course t means going back to pulmonology.

I called genetics this morning and got the name of the pulmonologist that is the best with genetic conditions, and her geneticist assured me that now that we have her genetic results they're going to treat her very differently at her appointments than they did prior to the test results coming in, when everything was sort of blown off and excused as "prematurity" and something she'd outgrow.

Whether or that means that the threat to the monitor is gone forever remains to be seen.

I remain skeptical after everything that's already happened.



And because I haven't shared this here yet, here are the two videos where I talk about our school experiences and choices and how we ended up where we ended up.

My big conclusion is that every family has to figure out what the best fit is for their individual children. And that isn't always easy.



The second one was a little bit hard to make, because the experience wasn't exactly easy (and when I made it I realized that I still feel a teensy bit angry about everything that went down).



But I think it's turned out alright. More than alright.

It just took a little bit of time to figure out where we belonged.

And that is that.

I'm trying to get back into the swing of things and I should have more time in the very near future.

Things just really need to calm down around here. And if that toddler could just keep breathing and stop desatting that would be a big help!

We're going to lose her monitor

I was hoping that her doctor would reassure me and tell me that we weren't going to lose her monitor and that maybe there was something that I hadn't thought of.

That didn't happen.

Tessie's Scariest Night

When I made this I had convinced myself that it had been four months since Tessie had had a bad night (for some reason I kept thinking it had been in January) but after I finished this I went back and checked, an upside of blogging and vlogging I guess, and saw that it was almost two months to the days since her last scary episode, which makes these almost like clockwork.

Our little Tess is totally and completely fine now, and had a great day at therapy yesterday and today. She's napping at my feet as I type this.

I just wish that we could get this figured out.  Okay, I really wish that everyone who said she would outgrow it was actually right... because that would have been awesome.

Here's the latest:

An Unexpected Call from Her Neurologist

This has been kind of a rough week.

And yesterday was a rough day in a rough week.

Last night as I lay in bed I realized that I'd really been so relieved when we went to that neuro appointment and there had been nothing big... not more appointments, nothing added on.

I am really, really grateful that her doctor is thorough.  I am really grateful that he went over her chart  and called that children's hospital.  And I'm really grateful that he called me back and talked me through this.

But I'd be lying if I didn't admit that I'm also really down about it too.  Because the rebound from "no appointments for a year" to "sedation and having to intubated...." is kind of tough.

I knew going in that this was a possibility and that this was coming up.  And it will be good to know that her little brain is good and is okay and nothing has gotten worse.

It's just getting there that's hard because sedating her is always extra scary.

In other news I also threw in how I didn't get my biopsy earlier this week, but now have a D&C (no miscarriage and biopsy coming up either this week on next week under general anesthesia).  So.  Lots going on.  And lots of updates.

Although my favorite part at the end is totally where Sadie tells us about the "football player" pushing her UPSIDE DOWN on the swing.

Tessie's Neurology Appointment

Because we hadn't had a big doctor's appointment in April and so we were overdue!

Appointments, Appointments, Everywhere!

From Tessie's team meeting to the medical supply store (that I really hoped to avoid, but couldn't) to a glimpse of my HIDA scan, it's been a busy week and this video takes you along as we zoomed from here to there.

Central Apnea Scare

Just when I start to relax and wonder if Tessie is outgrowing her central apneas, she has a night that let's us know that we can't let our guard down.

A Sleep Study and A Prayer Request

I wasn't planning on posting twice in one day, but Paul and James are gone right now and the house seems very, very quiet.

James had a lot to say about his sleep study and was very excited about it, but Paul texted and let me know that (as we anticipated) our super sensitive sensory boy is having a tough time being hooked up to all those wires.

I told the doctor I could not imagine a reality in which a sleep study would be possible for James and he said that they had kids with autism successfully do it all the time, so we should give them a chance.  I think our little bouncing three year old might give them a run for their money in this case.  He is stubborn to say the least.

He was so excited to talk about it though, and make a video watching himself talk about it.

But my favorite moment is at 4:45 when we were walking up the stairs and he asked me to do something for him while he was gone.



My heart!

So if you have a moment please say a prayer for our little guy tonight so that they can get accurate results.

The kid can't tolerate wearing socks.  I just don't know how they're going to get him to sleep with all those sensors on him.

Another Sleep Study (for Someone Other Than Tessie)

Yesterday I loaded a reluctant James into Paul's car and we headed north.

Within moments he was soundly asleep.  

He was going to see the pulmonologist at the office that Tessie goes to at the clinic at the Children's hospital a little over an hour north.  

I sighed as I thought about the process of getting Tessie an appointment there.  It had taken me months to be believed and get that first sleep study and then over a month to get the referral there, for a second opinion.

With James (I'm certain because of Tessie) things went quite differently.  It only took two conversations.

First I had told his neurologist what I was seeing (because I was fairly certain it was a "brain thing" because of Tess) and he told me to tell his primary doctor.  

So, reluctantly, I brought it up under "concerns" at his well child visit:

"I really don't want to tell you this," I began, "because I can't imagine him tolerating a sleep study."  

He had barely tolerated being weighed and measured. "But he gets up in the early morning and sneaks out of his bed and climbs up into our bed.  It's a king sized bed and a lot of the time I won't even notice that he's there."  

"And about four times now I've woken up and found him asleep, with nothing touching him, nothing over his face, on his back, not breathing.  And because of Tessie I knew to put my hand on his chest and I counted and I waited. I have seen him not breath for over twenty second before I shook him and he gasped.  So I know that he has at least four apneas that I had witnessed in which he was totally silent making no effort to breath.  And if I have seen it happen four times... well.... I don't want to think about how often it must be happening when I'm not watching."

Because, without the alarm I would have witnessed maybe four of Tessie's apneas over a year.  So four in a month... makes me uneasy.

His doctor felt strongly that he needed to be referred to the same doctor Tessie sees.  And this probably was another reinforcing piece in the puzzle of the likelihood of an underlying genetic cause... there are now a lot of questions about how Maggie slept as a baby (like a rock), and whether I suspected apnea with her (not at the time, but in hindsight... I believe it is incredibly likely... now I have no idea because when she goes to bed she tells me good night and says "Out please.  Door closed." if I linger.).  

If James does have central apnea, I guess we'll have to consider the possibility that he might not be the only kid that has it (I guess that would also offer fairly concrete proof of some sort of genetic abnormality that's causing the apneas, because central apnea without an apparent cause is incredibly rare, which is what her doctor seems increasingly to lean towards anyways) , but I'm going to try not to cross that bridge in my head before we get to it.  

James was so dramatic about the exam (being weighed, measured, having his eyes, nose, and throat checked, and breathing listened to, so nothing particularly extensive) that he managed to escape the office, clutching the a new toy motorcycle, car, and two stickers.  When we arrived home I think Patrick started to wish he'd gotten sent to the pulmonologist.

I will admit that I am planning this sleep study as a very special "Daddy-James" slumber party at the hospital.  Both because I hope that James will do better with his Dad there... and because after a half dozen sleep studies with Tess I'm a little burnt out.  

2017: A Look Back at Tessie's Year

A year ago yesterday Tessie and I woke up in the hospital after her very first sleep study and the tech looked at me as she unhooked her and told me not to worry too much because a lot of babies out grow these things as they get bigger.

I wouldn't know for two weeks that she'd just witnessed a sleep study that, when it was finally read by a doctor ten days later, and then passed on to her neurologist a few days after that when we finally made our way to PICU a doctor there would have told a nurse before we arrived after reading her chart that the very first thing that they would need to do was perform a tracheotomy the moment I carried her in the door.  

Because her numbers looked that bad.  

She had 45 central apneas and 136 hypopneas.  Her oxygen saturation had dipped into the 70s.  

But then we walked in and she looked like this and the most common phrase heard in the room was that "this is this baby?"

No one could believe that it was possible.

Which is how I ended up going home after that first trip without any sort of monitoring equipment.

Which turned into a sort of nightmare of its own.

2017 was a rough year in a lot of ways.  And a fortunate year.

I know that we are very very fortunate that she was okay and that she made it through all the nights that she slept without an alarm.

From January until March (really from June until March) she didn't have an alarm and I would watch her sleep and see her stop breathing and gasp when I touched her chest to wake her.

And I pushed and pushed and finally got a referral for a second referral.  That took a month of phone calls.

We went to the children's hospital.  Once they got the referral it only took two days for them to get her in for a sleep study.  By that night they had her on a monitor.

I thought our troubles were over, mostly because I didn't yet understand how her monitor was something that she would have to prove over and over again that she needed.

Every six months she'll have to show that she's sick enough (when she's asleep) to keep it.  

Which is stressful because she does have good nights.  And very, very bad nights.  

What if she's having a good night on the night of her sleep study?  

I can't tell beforehand what kind of a night she's going to have.  I can't even tell afterwards if she doesn't have an alarm on. As long as she starts breathing again every single time that she stops.

And the thing is that she is perfectly physically healthy when she isn't not breathing in her sleep.  She is strong.  She has great gross motor skills.  Her doctors have run just about every test they can think of and there's not explanation, and the "prematurity" explanation is beginning to seem less plausible to any of them as she gets bigger and is now on oxygen at night when she wasn't before (my 8 lb 12 oz, premature central apnea baby).

A couple of weeks ago they called to schedule another sleep study.  Already?  I said.  When? I asked. February.  The voice replied.  I thought it was six months. I said.  But I'd realized how this works.  The doctor says "repeat sleep study in four to six months" and they call and it's always four months to the day.  Which really adds up.  

It's the difference between three studies a year instead of two.

Especially when you're just trying to keep the monitor for as long as possible because you've seen your kid stop breathing more times than you can count, sometimes in a single night and you've asked the people who do the downloads "hey can we just buy this thing, how much would it cost?" and they got you a quote and it was well over ten thousand dollars.  

"February doesn't work for us." I said, finally learning.  "Six months out does.  Let's schedule that."  

It only took me an entire year to learn to ask.

2017 was the year when we had the very scary sleep study that became the study that had to be wrong because she had no apneas in the PICU on a good night, that was repeated and ended up being right three months later.  It was the year when she had another good night in October and almost lost her monitor again, followed by another very scary night and going back on oxygen on November.

And it was probably the year I got a reputation for pushing and pushing and pushing and believing what I was seeing with my own two eyes even when I was told that it was not possible (after someone wrote on her chart "does not have central apnea," which I found out was why no one would give her a monitor after her first trip to the hospital).

I am ready to leave 2017 behind.

2018 is stretching out before us.

In a few days we leave and take Tessie back to Boston, not for anything apnea related but for the second part of the autism study that she started when she was one.

As the child who has carefully avoided looking at us since she was a month old, and who preferred not being held from the day she was born (literally) I will not be surprised by spectrum-y results, but we shall see.

She is most definitely her big sister's apprentice:

Tessie News

I promise that one of these days I'm going to write about something else.  I was meaning to write all week, had blog post ideas flitting through my head, but I'm on day eight of a hundred plus fever and I've been falling asleep as soon as the kids are in bed each night.

I've even given up on NaNoWriMo this year, as mini disaster after disaster have kept me from writing until I've decided it's just not in the cards for 2016.

We had another scary night with Tessie.  It started with an alarm going off and a floppy baby and momentary terror that had my heart in my throat and was followed by a dozen more apnea alarms before morning, but this time I realized in early morning that the light that signaled a too slow heartbeat was also bright red and glowing.  And that is how I found myself on the phone again with the pulmonology office, the after hours line this time, in the early early morning.

It can be a delicate balance.  She has central apnea.  That means her brain stops telling her to breath.  That's why she has a monitor.  If I called every time she had a dozen apneas in a night I'd have called a lot.  Every night when she was tinier.  And the "is this important enough to call" can feel complicated.  Sometimes, as we've been on this journey with her, tiny things are actually huge and things that feel huge aren't important at all.

The person who was on call was in her car when she called back and explained that as a result she couldn't see Tessie's file, but after a moments conversation she announced that she knew exactly who Tessie was, because there had been some conversation in the office about the results of the second sleep study.  

Now for those who is new here, two sleep studies ago Tessie only had 15 central apneas, which was no enough for her insurance to continue to pay for her monitor.  I fought this, because she's had instances, like the one the other night, where she's stopped breathing after having next to no apneas for a month beforehand, and had to be turned onto her back and had her chest rubbed hard until she gasped and started breathing again.

I spoke with a nurse twice and was told they would not be budging on this, it was policy that when there were less than five episodes an hour the monitor went back to the medical supply company, and than Paul spoke with one of the pulmonologists and was told the same thing.  We finally took her in to see her pediatrician and he called and fought for her to keep the monitor and they ordered another sleep study, saying that if this one is normal we'll know with 99.99999% certainty that she is fine.

I will admit that I felt like I was being humored.  And what were the chances that she would have a bad night?  They were terrifying, but also few and far between.  

But she did.  She had multiple instances of hypoxia, which earned her the right to keep her monitor for another six months, and resulted in the delivery of a giant oxygen machine that gurgles happily in the center of the room all night long.

The On Call knew who Tessie was because there had been a conversation in the office about her case when the results of the seconds sleep study came back, about "mother's intuition" and how unlikely it was that I had persisted in pushing for more tests.  She said the talk in the office had been that "if that baby had been with another family, it could have been..." her voice trailed off and she left the rest unsaid.  

It could have been very, very bad, my mind completed the sentence.  

Two nights ago, Paul had gotten to her before I did, he was maybe three steps ahead of me, and he shook her shoulder and she had flopped back and forth still, soundly asleep and for a split second, before I realized that the heart monitor was still showing a steady green light, I was terrified.

I thought that we'd lost her.  Then I saw her chest moving steadily up and down again and I couldn't stop shaking.  

If she hadn't had her monitor then, would she have been all right?  

Still the sleep study and hypoxias have bought us six months with her apnea monitor and maybe in six months she really will have outgrown it.

If she's going to outgrow it.  

No one can tell me if she'll outgrow it because we still have no idea why it's happening.

Or maybe I'm going to be holding my breath every six months, forever.

There is a tiny sliver of good news in all this though.  

Tessie has had weekly therapy sessions since her developmental delay became so glaringly obvious when she was between one and three months of age (at three months she was missing virtually all of her one month milestones).  

Her last evaluation was about a month ago.  Her results came back showing some big strengths.  She scored a 12.5 out of a cutoff of 7 for intelligence.  Her gross and fine motor skills were similarly strong. But she was way below the line in social communication and initiative, giving her a 40% delay in those areas.  Which is... not insignificant.  

However after five days on oxygen she was vocalizing way more than she usually does and was making a little bit of eye contact and definitely using her voice (in whines mostly) to let us know when she wanted something.  Usually she doesn't do that and doesn't let anyone know when she needs something, so that was extremely encouraging.  

Her pediatrician is planning on sending her for an autism evaluation in a month and a half when she if officially eighteen months old.

On Wednesday we were at the older kids' gymnastics classes and she fell asleep on me for the third time in her life (if I'm counting correctly).  She loves to snuggle but it's almost impossible for her to be still against me.  Usually when she's tired she wants to be in her bed by herself and she quietly falls asleep.  Which is how she has been since the day that she was born.

So I loved every moment of her sleeping quietly against my chest.

And in other news, she was able to have a equine therapy session alongside Maggie yesterday, which was hilarious to watch.  At one point she was riding along and I could see her bouncing up and down on the saddle happily as she went past.

So we wait and pray and cuddle our hilarious and strong little bunny.

We are so lucky to have her.  

Roller Coaster Weeks

I'm laying in bed listening to the hum of the oxygen machine that arrived earlier today, feeling thankful that I shouldn't have to tell anyone that they can pry Tessie's breathing monitor out of my cold dead hands, for at least three to six more months.

The last month has been a roller coaster of sorts.

It began the first week of October when Tessie went in for a sleep study.  

During the sleep study she had 15 central apneas.  For anyone who's new here, that means that fifteen times her brain stopped telling her to breath for more than twenty seconds. 

But fifteen apneas, with desats that only went down to 88 was not enough, according to the insurance for her to keep her monitor.  

The nurse who called told me this in a cheerful voice.  It was great news.  I should be excited.  No more plugging in cords and turning on machines.  

She did not expect the sheer panic of my response.  I told her this story.  I told her how she had stopped breathing twice during the summer, after weeks and weeks without an incident, and how I'd had to turn her over and rub her chest to get her to breath again.  

I told her I was terrified to lose that monitor.  

She said she'd call me back.

Another nurse called me a few hours later.  She'd talked to the doctor and the doctor was clear.  Tessie didn't need a monitor anymore.  It was standard protocol for a baby with only 15 apneas a night.  Most babies, she explained, were off the monitor at six months.

This baby was diagnosed with severe central apnea at six months, I said.  

In the following days we begged and pleaded and argued.  Don't call the monitor company.  Give us time.  Let the insurance deny it.  Let us fight the insurance over it. Her neurologist agrees she needs to be on it still. Paul called several times and the pulmonologist made it clear: this was protocol and nothing could be done.

I was frantically making calls and leaving messages, first on Tessie's neurologist's nurse line and then with her pediatrician.  The nurse at the pediatrician's office called back twice, and the second time we spoke she suggested I bring her in and talk to the doctor in person.  

I kept missing the pulmonologist's calls while running around getting the other kids to their schools, and therapies, and activities, and I still hadn't spoken with her two days later when I went in to see Tessie's doctor.  

I had dodged several calls from the medical supply company asking when they could pick up the monitor.  

I went in to see how much apnea monitors cost and I sat in the office sobbing when they told me that her monitor was $10k and that it was billed as a service (unlike some machines where insurance payments can ultimately lead to the patient owning the machine).  They wouldn't take it away, they assured me.  I would just have to pay for it.  And the quote put it very much out of reach.

I went in to the appointment feeling hopeless, but also determined that I was going to make every possible appeal to keep the little monitor that beeps when she stops breathing for more than twenty seconds.  

Her doctor called the pulmonologist twice while we were the office and we sat in the exam room and waited for the pulmonologist to call back.  We talked about my fears.  He said that the pulmonology nurse had told him that they weren't worried about Tessie because once a baby who had central apnea as a result of prematurity is down to 15 apneas a night, the apnea is resolving and isn't a problem anymore.  

"But we don't know that she has apnea as a result of prematurity." I said quickly, quoting his own words back to him.  At every appointment, with every specialist and doctor she would see I would always ask "is it going away" and they would always say the same thing and now those words came rushing back to me. "She was 8 lbs 12 oz and full term and I keep asking every doctor she sees if they think it's neurological immaturity and if it will go away eventually and everyone tells me the same thing: we just don't know."  

"We're on the same team here," her doctor assured me.  And he promised to call when the pulmonologist called him back.  

He did.  And in the two minute conversation he had with her pulmonologist he had more information than I'd gained in months of appointments.  

The pulmonologist had said that when apneas decreased to the frequency that Tessie's were at they were going away when they were caused by prematurity.  Her pediatrician had asked if her apneas were caused by prematurity.  We don't really know, the other doctor said.  We don't know for sure that this doesn't have something to do with the brain hemorrhage that she had.

I nearly fell over.  

I'd been asking the same question for months and had been told over and over again absolutely not.  It couldn't be the brain hemorrhage because it "wasn't clinically significant."  

Maybe the two were entirely unrelated but as a layperson it certainly felt suspicious.  Not that it would make a difference. Tessie's brain hemorrhage very likely happened before she was born and it is what it is.  

He told me that he was going to write a prescription for a monitor and that the pulmonologist had agreed to order another sleep study. 

"Her pulmonologist says that if this one is normal than it's a 99.999999% chance that there's nothing there to find."  

I thanked him and hung up the phone.  

Earlier this week, before we made it to her sleep study which had been scheduled for this Saturday, it happened again.  Tessie's alarm went off seven times in a fifteen minute span.  Five of those times she started breathing again on her own.  Twice she didn't.  This time I didn't have to flip her over.  I just had to rub her back hard until she gasped and shifted herself around and went back to breathing deeply as she dreamed.  

"Don't hesitate to take her to the ER," the pulmonology office told me.  "But I do," I explained.  "Because we've been to the ER for this.  For not breathing.  For seizures.  And yes they're terrifying when they happen.  But then she wakes up, and she looks fine and I take her in and they look at her and say 'why on earth did you bring this perfectly healthy baby to the ER.'  So I do hesitate."

They bumped us up to Thursday.

So I worried my way up to last night when we went in for the sleep study and Tessie tossed and turned and fussed and complained about the nasal cannula.  And I stared at her half the night and listened to her perfectly regular breathing and I knew, I just knew, that she had had a spectacularly uneventful night.  I didn't even hear a single apnea this time.  

She had already had one of her rare scary monthly events.  And we'd already met our monthly quota.  

They hadn't seen what I needed them to see.  

I was folding laundry at home when the pulmonology office called.  To tell me that she was perfectly fine and didn't need a monitor, I thought.  

Instead the nurse delivered news I honestly had not expected.  

Tessie had had central apneas.  She'd had desats down to 82%.  She needed to be on oxygen at night.  The medical supply company would be delivering it immediately.  They'd already sent the order in.  

They would order another sleep study in three to six months, she said. 

Six, I thought.  I'm going to be pushing for six, and not just because sleep studies are pure torture with a toddler.  

And for the moment, I am relieved, because for now if she stops breathing an alarm will sound and I'll know about it.  

Hopefully in six months she really won't need it.  And if someday she really doesn't need all these wires and tubes, I will be ecstatic.  I will be overjoyed.  

But until that day I will be holding onto that monitor with every bit of energy left in my body so that I know when she isn't breathing, so that I can help her start again. 

With the help of a 1/2 liter per minute of oxygen, even if Tessie does firmly believe that nasal cannulas are the worst invention ever made.

  

Tessie Alert: An Update of Sorts

Every time I think about writing a Tessie update, Maggie's sweet voice singing "Tessie alert!" from just behind me in the backseat of the car goes through my mind.

It's from the driving app that I use, and it asked me at some point if I wanted to add a baby reminder when I arrived at each location.  At the time I thought "why not?" and when it asked what I wanted it to say I quickly typed in "Tessie alert!"  

So now, when the app and alerts are turned on and I arrive at wherever I'm going, it says "Tessie alert!" which Maggie decided to turn into a script.  

She says it now and then when we've stopped the car, but also while we're eating dinner, or when she's walking by Tessie in the living room.  

It probably doesn't quite fit the rest of the post, but it seemed as good a place as any to start before launching into the knowns and unknowns of which there are more of the later than the former.

I needed to ease into this post.

Tessie is growing and learning.  A week from tomorrow she'll be fifteen months old.  She is a great walker, and actually ran across the room today to dart onto the front porch when her therapist was leaving so that she could play in the sandbox.  

99% of the time she looks and seems and as far as I can tell is perfectly healthy.  

There's just the tiny sliver of a percentage of the time when what's going on with her still scares me.  

Her central apneas are almost completely gone.  This summer I thought that they were finally gone.  

We were past it.  

It had been almost two months since the alarm had gone off for anything other than a detached cord.  

Then one night in July, the alarm started to go off.  I was getting the boys to bed.  I got up and walked into the room, but I wasn't hurrying.  I fully expected her to be standing there, at the edge of the playpen, looking at me, having pulled a wire off of her chest strap.  This happened several times a week and it hadn't been a real episode in so long.  

She'd become such an expert at removing her oxygen sensor I'd stopped putting it on.  What was the point when she'd have it off in five second flat?  So the respirations per minute and heart rate monitors were all that was left.  

Tessie during a study in Boston.  This cap is pretty much one of the best things ever
and I really hope it's approved for clinical use because it would make EEGs for kids like Maggie
so much easier.

But she was asleep.  Well, I thought, she still sometimes pulls wires out when she's asleep.  I glanced at the monitor.  It wasn't reading as unplugged.  I looked at her and realized that this was real, she wasn't breathing, and hadn't been breathing for twenty second when the alarm first started sounding.  

I rubbed her back hard and she took a breath.  Two breaths while I ran by hand back and forth across her back.  I stopped and stood and stared at the numbers on the monitor.  The respirations per minute went up for a moment then started to plummet again.  

I looked back at her and her back was perfectly still.  As the monitor read zero I turned her over and rubbed her chest and she took a big breath and then another and another. She had started to breath on her own.

The alarm went off a few more times in the following hour, but I stayed close by, and directed a fan towards her and finally whatever episode had begun ended and for another month everything was fine until, just as I started to relax and think maybe she'd outgrown it, it happened again.  

Now once, not that long ago, this would have sent us running to the ER.  But when you have a baby that was stopping breathing 45 plus times a night, with the alarm going off all night long, it was a big deal that she needed so much stimulation to start breathing again, but not so out of the ordinary that I thought we should go in.  

This was not all that long after being sent home after Maggie's seizures, and I'd been asked plenty of times by doctors if she ever didn't start breathing again on her own, and I'd said yes, and they'd nod and make a note, and that was that.  No one acted like it was that abnormal considering her diagnosis.

At Tessie's last doctor's appointment though, I mentioned what had happened and she paused and asked if I had called the pulmonologist.  I explained that I hadn't, because she hadn't seemed to think it was a big deal when I'd mentioned it before, but her primary care doctor did think it was sort of a big deal, and she had me call and the new plan of action was to go straight to the ER if it ever happened again.  Thankfully it hasn't.  

It's been a month.  

But lest I relax too much we had the scare of two and a half weeks ago.  

We'd had a long day.  It was the first week of school for Maggie, and her first full day.  We'd been picking up and dropping off the big kids, playing at parks, and running Maggie to therapy and Sadie and Patch to gymnastics and by the time all of that was through Tessie was exhausted.

She fell asleep in the back of the car.  

When we got home I was about to unload Tessie when I saw that she was asleep.  So instead I grabbed a bag and started pushing the pieces of school uniforms that had been discarded in the car between school and gymnastics into it so I could take them in and wash them.  When I straightened up and reached for Tessie I froze.  

Her head was moving back and forth rapidly, almost like a very fast, very intense tremor, and her eyes were moving back and forth in her head.  Before I could get her out of her car seat it was over.  By the time I got her to the house she was babbling.  

I called the neurologist in the morning and the doctor who sent us home from the hospital last time called back.  After listening to my description she said that it sounded very much like a type of seizure that occurs upon waking and that I needed to get it on video.  Which has led to some very cute videos of Tessie waking up, as I pull out my phone before I try to wake her, but thankfully no more seizures.  

If I never have a chance to get that on video I will be perfectly happy if it means it never, ever happens again.

Unfortunately the last little scare was just last week.  It seemed small enough.  But it almost landed her back in the hospital.  

Tessie had to work really, really hard to figure out how to drink out of a cup.  And we bought just about every kind of cup on the market before we found one, a sippie cup, that she finally figured out how to drink out of.  

Okay I actually do need to back up.  Earlier this year, shortly after Tessie's birthday, she narrowly avoided having to go back to the hospital because she couldn't figure out how to drink out of a cup and nursing was no longer enough to keep her hydrated.  

But she finally figured it out and within an hour of a doctor who knew her from past appointments telling me to bring her in, after I mentioned her unusual heart rate to him during Maggie's EEG (and that while her pediatrician wasn't worried it just seemed odd because it was staying well over 150 beats per minute while she was asleep, and had been for a week) and he pretty quickly asked about fluids and said we need to bring her in ASAP (she'd had less wet diapers but was still having 2-3 a day).  

Thankfully since I was out of the house for half a day at the EEG she was super motivated to figure out the cup and finally did and drank so much that her pediatrician said to watch her but that she should be fine without going in.  And by the next day her heart rate was back to normal.  

And that was great until last week when she promptly forgot how to drink out of the cup and would desperately try to drink only to have the water spill out of her open mouth.  

By the second day of this I was freaking out.  

 I left messages with both her neurologist and pediatrician and made an appointment with her pediatrician for the next morning.  

She finally began to refigure out the cup that night and got a few sips. The next morning she got a little more water down and finally had a wet diaper, while we were in the doctor's office, which the doctor told me kept her from being admitted then and there.  

And she's back to guzzling water like a champ.  

And that's more of less where we are now.  

I keep thinking we're past whatever is going on and then something happens and I'm panicking wondering whether this is just a normal toddler thing or if it's something that should send us to the ER, because if the last year has taught me anything it's that it can be really hard to tell the difference.  

Is she being normal toddler clumsy or having seizure?  How can these two things be so hard to tell apart?

I have a letter in my car that would admit Tessie, without stopping to register, to the PICU at our local hospital if she starts to become incredibly clumsy again, but do I use it if she's having an actual seizure, because I've been told not to bother coming to the hospital if a seizure is less than five minutes long, just to call the neurologist.  

Honestly it can be so confusing sometimes and the line between "am I being paranoid because so much has happened" and actual panic because this can be really frightening is so fine.

But I'm clinging to the fact that she is totally and completely healthy the vast majority of the time.  And cute.  Let's not forget cute.  Although I may be more than a little biased.

The boys think she's pretty cute too though.