Apnea The Fight

OK, I have been avoiding this post for awhile, now. Mostly because I don't even know where to begin, and partly because I am in no way an expert on this topic. I can't even say I'm well-read on it! All I know is Mallorie.

I have worked as a nurse with families with children with "special needs" for years. One thing I have learned, since having Mallorie, is that I knew absolutely nothing about their experiences. Before Mallorie, I always felt that I listened well, and that I could eventually "get" some of their experiences because of really listening and wanting to understand. Since Mallorie, I've learned how deluded I was in believing that I could possibly have "gotten" their lives. I can/could only relate to someone else to the extent that I have experienced something which intersects with their experiences. Beyond those intersections, I am only guessing.

Before Mallorie, I had had the experience of feeling frustrated with a pediatrician where I felt I was not being heard, or there was some sort of conflict that I didn't know how to resolve. But SINCE Mallorie, I have been thrown 100% into the sharing of the life experience of mothering a child with "special needs." What I have learned, and what I could not possibly have understood before having her, was that life isn't just about not being heard or understood. When you are the parent/advocate for such a child, just about every other situation involving getting care for her ... medical care, special therapies, equipment, ... heck, even advice ... can involve "the fight."

The Fight began before Mallorie was born. It began the day we had an ultrasound that revealed that her arms were measuring shorter than they "should have been." And that she probably had hand deformities. A meningocele. And the perinatologist mumbled that he "couldn't visualize her entire brain."

(**By the way. She has an entire brain. She has a very FINE brain, actually. Just in case that particular doc ever finds me and asks me again. Maybe "fine" is in the eyes of the beholder, and maybe not. But the point here was that the words which should have been underlined in that report were "couldn't visualize." But I remember the point where I had part of that report read to me later, and had to make that statement, that I had heard him mumble the phrase, and took it to mean, well, ... couldn't visualize ... I think it was the corpus callosum. Never that she was missing it.)

Anyway, The Fight began that day. And the questions. If I ran into pregnancy problems, what was the plan? Did we want to do non-stress tests to watch for early signs of fetal problems? Did we want to do a c-section because of the meningocele? What was our birth plan? Would we want a c-section if there were signs of fetal distress in labor? Did we even want to monitor the baby through labor? Did we want oxygen if the baby needed it at birth? Did we want resuscitation? Did we want NICU care?

Because of the particular medical professionals we were blessed to have involved (not counting the perinatologist), The Fight ... at least during the pregnancy/delivery and time immediately after birth ... didn't necessarily have to do with anyone saying they wouldn't agree to a particular request we might have made. But it had to do with defending against a deep-seated belief in the written word about Trisomy 13 and Trisomy 18, which existed in the minds of those amazing medical professionals. Most of what is written about these disorders can be boiled down to this: the likelihood is that if you are expecting a baby with one of these disorders, you should be prepared to lose her/him very early. Best to be prepared, and make your decisions accordingly. And plan on all the things that you will NOT ask to have done.

After her birth, however, The Fight meant that over and over, life-giving procedures that would have been offered to a "typical" baby with the same conditions, were discussed/debated, instead of being offered. It meant that we were questioned over and over if we were certain that we wanted X done. Did we fully understand that if the opening on her back (which had opened during delivery) were surgically closed, we would probably end up with a baby later needing a shunt? That we'd have to monitor her for the rest of her life for signs of needing a shunt? "So? If you don't close her back, she will die." Well, that's why we need genetic testing. To help make these kinds of decisions. In another conversation: to help the surgeons decide what they will be willing to do.

We were helpless in those days, in the face of all those "experts" who managed the gateway to whatever treatments and surgeries she required. We weren't very eloquent. Our appeals on her behalf were fraught with emotion, and really, emotion was all we had, besides exhaustion. Emotion sounds like foolishness in a family "planning" meeting in a room full of geneticists, genomists, a social worker, a nurse, and one very nasty attending neonatologist. We were threatened, actually; told that genetic testing would be done by the time she was discharged. Because if we did not agree to it, then the attending would go before the ethics committee and get permission to do the testing, anyway. A few moments later, after I realized just what he had said, and told him it was just wrong and then left the room, the same doctor told my husband that he didn't actually need our permission or knowledge to do the testing.

We were utterly helpless through our words to gain anything at all for Mallorie in those NICU days, and in those moments I truly believe that God spoke on her behalf. We certainly were not heard.

And we've had many other situations since those days, where we've had to fight for something that shouldn't have been such a hard fight. But these days, we feel we're fighting much less often. She's here, she's past the first year mark, and it's sort of like she has made her own case for her right to receive care. But I still have concerns for other babies and parents who still are going to face these sorts of obstacles in the earliest days, when things are so critical. And I shudder today to think back to those early days with Mallorie and think: "What if?"

What if the NICU attending who was so very negative and not wanting to do anything without genetic testing first, did not decide, "You know what? Let's try caffeine to see if it helps her apnea. It probably won't work, because the babies we know it works on are premies. And Mallorie wasn't premature." What if, when the caffeine trial didn't work, once she reached the target blood level range, they stopped the drug and said, OK, it was a failed trial, as we expected? What if they hadn't said, "Let's just try going up a little on the dose, because some babies do respond to higher levels?" What if she hadn't been hospitalized in that NICU long enough for apnea to return again ... serious apnea and bradycardia (low heart rate that can accompany low oxygen levels) .... and someone one day hadn't decided to check the caffeine blood level and learned it was LOW? And so we would have missed the chance to learn what happened when they gave her a bolus (extra) dose of caffeine and increased her ongoing doses? (The apnea disappeared, again.)

What if the neurosurgeon hadn't finally been willing to do the surgery to close her back (after 2 days of debating)? What if he insisted on genetic testing first? And what if genetic testing proved she had one of those conditions they call "lethal" and "incompatible with life?"

What if God hadn't already placed our amazing pediatrician into our lives? What if we had someone uncomfortable about attending Mallorie's birth? Uncomfortable with praying over her? Uncomfortable with providing her anything beyond "comfort care?" What if she hadn't taken the time to watch our decisions evolve those last 20 wks or so of the pregnancy, from "no tube-no vent" to the final version of our birth plan? What if she hadn't listened?

OK. I lied. This post is not about apnea. It's about The Fight. The exhausting and ongoing Fight.

And about the need for an openness to the possibility of something happening which is outside the statistics. It's about the Joshuas and the Tristans and the Annabels and the Jacobs and the Cohens and the Stellans of the world. It's about daring to hope. It's about hoping against no-hope. It's about saying people do not always obey the predictions or the statistics. And even IF they do, 5% is NOT 0%.

Maybe the next post will be about apnea.

Cool new "tool"

I promised to tell about the cool new bottle we got in the recovery room after Mallorie's surgery. It's put out by a company called Zip-N-Squeeze, and is called a Soft Sipp bottle. It is AMAZING.

Of course, it was created by a nurse. :)

It has a one-way valve, so you can control the rate in which you give liquids, and has a really, really soft and flexible tubing that doesn't even hurt the mouth to use after surgery. I wish we had known about this bottle sooner.

Mallorie had been unexpectedly hospitalized for almost a month in February, after she had a mouth surgery. Although she had not been fabulous about taking bottles before then, she got so she would not even take the occasional bottle, ever. She had developed some gagging and vomiting issues, partly due (I think) to some formulas we had been trying, and I think partly also because of the time she spent with a tube in her throat while she was on the vent. She eventually became upset about anything being in or near her mouth, including a bottle nipple, and would gag and vomit in response. She would only take sips of water or Pedialyte drizzled into her mouth by syringe.

Except for that bottle she took on Saturday, it had been several months, I think, since any of us have been successful in getting her to even take a sip except by syringe, so we carry syringes everywhere. The problem with syringes is that they are either so small that you are refilling them every few minutes ... a 10cc syringe is just 2 teaspoons ... or you look goofy squirting a 60cc (2 oz) syringe in your kid's mouth in public. It looks like a horse syringe!

But with this new squirt bottle, you can feed liquids in a controlled fashion, and because the tubing is so thin and soft, even Mallorie, with the oral aversion she'd developed, took to it easily. And no sucking is required, so it's great for kids who haven't developed a good suck, but who still can manage to swallow liquids without aspirating. It holds 3 oz (about 90 cc).

Of course, if she ever decides she likes her regular bottles again, we may outgrow our need for her ZNS bottle!

Every little thing is gonna be all right

I wanted to check some emails early this evening, and sat down for only maybe 5 minutes before I heard a THUNK, and heard Hannah cry, "Oh, no, oh no!" Mallorie had rolled off the couch, where she had been lying next to her sister.

Running through my mind was, do I have to take a shower to go to the ER (no, I haven't had one yet today, and no, I wouldn't have delayed medical care for it ... it's just what crossed my mind) and does she need a CT? I dont' know if I thought of calling the doctor or if my daughter did, but eventually I'm talking to the pediatrician and somehow managing not to be sobbing as I tell her Mallorie fell off the couch.

"What's she doing on the couch?"

OK, not the point. It's where we keep her most of the time, on pillows on the couch next to us. And I almost forgot; she was laughing. "STOP laughing! It's where we keep her."

"Well, maybe you better rethink that one."

OK, why are we going through all of this couch thing? I asked if she needs a CT (yeah, I go big-guns all the time), and she went through the "decision tree" with me. Things to watch for, what might be the reasons for the bleeding coming from her nose, to give her some Tylenol and not Motrin, etc. She said she wasn't surprised if she hit her face, with her being so top-heavy. That she would be most concerned about her not being able to move her head, or her limbs. I then heard her change it to not being able to move her upper extremities, because with Mallorie having spina bifida, she knows her legs don't move much. Put cold compresses on her nose, try to see where the bleeding is coming from (she just had surgery on her nose), etc. All common sense stuff that I cannot think of when I am holding my littlest one in a moment like this. All the things I need to hear her calming voice telling me. At least she had stopped laughing, too.

So, this is to Mallorie's pediatrician.

Thank you so much. I just panicked. I have this fear that comes up in moments like this, that I'm gonna do something wrong and all the healthiness in her will be gone. Thank you for calming me down (again).

Mallorie's on my lap, a little stoned. What other kid's mommy gives her Tylenol with Codeine, when the pediatrician says to give some Tylenol? I'm the good kind of mommy! We're listening to Bob Marley, "Three Little Birds" and she's beating her left arm (the one she doesn't move as much) and rocking her head to the beat.

I love you, Dr. B.

Woke up this morning,
Smiled at the rising sun,
Three little birds
Sat by my doorstep
Singin a sweet song,
A melody pure and true,
Singin, (this is my message to you-ou-ou:)

Singin: don't worry about a thing,
cause every little thing is gonna be all right.


As I finish this post, she's grinning now. And tapping BOTH arms and kicking BOTH legs to the music. And I almost forgot! She drank her entire bottle of milk while she was waiting on the Tylenol/codeine to kick in. Be sure and notice that I said drank, and not took it through a tube.

All the while striving to maintain an appearance of maturity, ....

After I wrote about Jessica’s pureed foods post, I was talking to a good friend, and told her that after re-reading what I’d written, I was mortified to realize I sounded like a teenager, excited because my "BFF" had just written!

I was trying to explain to my friend where the excitement had come from, that, although I’d done things like pureeing table foods for my older children, somehow I have managed to treat Mallorie very differently, all the while wanting to make her life experiences “normal.” And so everytime Jessica makes a post about a “normal” thing she does for her Alex (and she does a lot of them), it’s like she opens a window into her home for me to see some possibilities I’d not even explored.

Here’s another example: for my outside job, I am required to do visits in homes of children with medical conditions. My coworker and I went to someone’s home last week, and while while we were there, the child (a couple of months older than Mallorie) was put into her high chair and offered finger foods. Granted, the finger foods part isn’t in Mal’s repertoire yet, but I sat mesmerized as that little girl fed, because I could see Mallorie sitting there. I was struck by the fact that we’d never purchased a high chair for her! I could use the excuse that she has poor trunk and head control, but while that is true, the truth is, that we’ve never even looked at what’s out there in terms of something as simple as a high chair. I thought the high chair this child was seated in




just might work for Mallorie (maybe with towel rolls next to her to prop her up), because it looked like it might have better side coverage than the ones we had for our other children. But I didn’t know that, because I NEVER go into the baby section of a store with a thought in mind except to buy cloth diapers or onesies. Somewhere, I guess, I’ve closed myself off from experiences that might bring up a sense of longing, and in the process, I’ve missed out on some of the “normal” things that might still work for our girl. There are other things. Like the day (again on a home visit), I saw a baby seated in an Exersaucer,



and suddenly realized it would be fun for Mallorie. Here I’d been perusing catalogs for overpriced “sensory toys,” and all she needed was to be placed in the same sort of sensory extravaganza other babies enjoy! Am I slow, or what?

So, anyway, here I am. I have this amazing little girl, who has brought such joy and love into our family. Caring for her does involve some things that most of the parents around us don’t encounter, like figuring out how to squeeze baby foods into a feeding tube instead of piling it on a baby spoon. And I can’t look at pretty hair ties without wondering if I need to buy more to connect and use for hanging a feeding syringe. But very much about her is, well, normal. Typical. She wants to be picked up when she cries at night. Although I’ll admit she is “special” in that she had 2 months of exceptional NICU care by nurses determined to establish a good day/night schedule, so she doesn’t cry much! But she enjoys being held. She knows and adores her siblings and her parents and others in her daily life. She loves when we sing to her. She also loves SpongeBob, apparently.

(And she might need a high chair for sitting at the table! We have to try it out, at least.)

So anyway, when I told my friend, Shannon, about how goofy I sounded in the post I’d made about Jessica, and tried to explain how good it feels, sometimes, to connect with moms who “get it” about things I think about every day, ... like how important it is to figure out ways to put “real” food in a g-tube, ...

Shannon interrupted me to ask, “What’s a g-tube.”

I asked her what planet she lives on??!! And then I sat down to check the blog of my new BFF, Jessica. So maybe my post about Jessica imparting her wisdom didn’t sound particularly mature. So what of it?

Alex's mommy is imparting some wisdom right now....

As I was saving the last post, I realized, my ultrasmart and really sweet friend, Jessica, was posting for ME! I asked her to share her secrets about making her homemade baby foods, and she asked me to "give her a day." Literally, a day later, she's sharing, and there are pictures!

You can find the link to Jessica's blog in the sidebar under Alex Pruitt.

OK, maybe she wasn't posting only for me, but I can say that on MY blog.

Specific answers to prayer

Hey, I forgot to tell everyone how God answered ALL of the specific requests we had from September 18th!

IV site. I had told you that her IV's in the past had been pretty much all in her scalp. So I only expected we'd be lucky if they got a scalp IV, because her veins in her limbs just can't be located. Well, the amazing Dr. B (the anesthesiologist, not one of Mal's mommies) found one on her tummy! Right above her g-button. I couldn't have been more surprised by that, nor more pleased. It was SO much easier to keep safe from being pulled out in that site.

Successful surgery with no problems during or afterward – particularly no respiratory problems. There were NO problems. In fact, when the resident came in the next morning and said he'd be back to check again that afternoon, and planned to discharge her the following morning, I told him she was FINE. We were ready to go home that day!

No pain. She was so comfortable, and didn't really require any IV pain meds after she left the recovery room. And only one nurse held off on her pain med when Mal was having pain (the nurse pointed out that it was 10 minutes early.) Ahem. Let's just say that this silly little moment reminded me that the best place to recover, if there are no respiratory problems, is at home with your family. Mommies and daddies don't seem to quibble over the odd 10 minutes here or there on the day of surgery. OR afterward. :)

No problems with gagging/vomiting. We not only had no issues with these, but we got a cool new "tool" that I'll share in the future, a squirt bottle so we could give her Pedialyte by mouth. We've learned in the past few months that a few cc's of water or Pedialyte to sip will usually stop the gagging right away.

I was realizing this morning that it could look like we just accepted this all, without question. Nothing could be farther from the truth! We took nothing for granted, and stood by in awe as everything fell into place. When Cathy would text for updates, there was simply nothing to tell except that she was doing so well! We were able to remain calm while she was in surgery, and kept trying to read Hannah's literature book and stop reading all the "tween" magazines that Matthew and Hannah talked John into purchasing.

Something new

John thought Mallorie was asleep as he walked near her crib, but he heard the sound of her lips smacking, and got this picture. THIS is something completely new for her; she has almost never sucked on her fingers or anything else, and we don't know how much of that was that she never had a good lip seal, and how much was that she had such a strong oral aversion. She's had so much un-fun stuff done to her mouth (suctioning, mouth appliances to pull the hard palate together before the first mouth surgery, a total of three mouth surgeries, and that time in February when she was on the vent for so long). Oral aversion was to be expected, and is part of why speech therapy is so important for her. So it makes stuff like this all the more exciting.

We go back tomorrow to get the tube taken out of her nostril. She somehow pulled/prodded it out today, and freaked the kids out, so they pushed it back in before I ever saw it. It's bothering her a lot, so it will great to have this over with for her.

And yesterday she let me give her some baby food (fruit) by mouth and nothing went up into her nose, as far as I could tell. This makes me VERY hopeful that the surgeon was right, and he might just have closed the opening between her upper lip and gum.

Oh, and her extremely smart and wonderful pediatrician has always had a problem with what she called us "rushing to cut on her." She is so very protective, and I say (to myself) that it sometimes feels like she's another mom for Mallorie. She's certainly taken some ownership rights, and gotten all huffy about certain issues ... which in MY blog shall remain undiscussed. :)

So, Dr. B? It's looking like it was worth it all, huh?

Day 12

I was not sure about posting this picture, because it's still early, and there's still more healing to go, but where she had surgery is looking so much better, now, that I thought I'd go ahead. She still has a tube in her nostril (providing support) and that will be removed in a week. It looks to us like she probably has pulled out a few stitches prematurely (again), but that's OK. I think it was itching, and she worked and worked to get herself onto her tummy to rub the nose against her bedding. I sympathize with that!

Just look at the cute crooked smile! :)

I apologize for the quality ... took this on the cell phone today, then sent it to email and tried to crop it in "Paint." I should leave well enough alone, and let the kids do it, right?

The bedding worthy of a princess

Some people have commented about the princess bed, and I realized I needed say that it isn't her bed. She sleeps in a boring old crib. The princess bed belongs to a friend, who was kind enough to share her bed (and sister's bed, and their entire room) when we were evacuated. You are right, Janet; pink is not my color. But apparently, it's Mallorie's. And she has been whining about having a princess crib ever since.

Preview (PRE-surgery)

Just because you're having to wait for post-surgery pics. These are pre-surgery.