Wednesday, December 31, 2008

Hospital Day 2

We are still here. Mallorie is doing better, but we expect it will be a couple days till she will be discharged. Certainly not today or tomorrow.

I didn't sleep at all in the ER the first night (Monday night), and got just a few hours last night, and then went to work today, so I am beyond exhausted. I want to just make mention of my amazing Hannah (14), who is beyond wonderful as a daughter and as a sister. She is the one who decides whether or not Mallorie is dressed fashionably, and because she knows Mal loves a nice spa treatment, she will often give her a bath for us, "just because." Just because her baby sister enjoys the water so much, and because who doesn't love a baby who smells of the 1001 different brands of baby soaps that Hannah can find whenever she's out at her fave store, Target.

As a daughter, Hannah is extremely sensitive and compassionate, and such good company. She's who stayed with me in the ER, and also last night. The first night, there was only a chair to sit in next to the stretcher Mallorie was on, so I just stayed up, and Hannah curled up on the stretcher next to Mallorie, and was able to get in a little bit of sleep. Last night, Hannah insisted several times that I try to sleep, and she'd watch Mallorie until she went to sleep. But last night was like this night - the night the steroids kicked in. At least that's my theory. Mallorie spent from 8 pm till about 3 am just tossing her head back and forth frantically, and moaning, unable to calm down for more than a rare moment. I was so anxious about losing the IV, and the whining and moaning were loud enough, that I didn't even drop off till 11 pm, and I kept waking up. Once, I heard Hannah plead, very softly, please stop, please stop. Not with impatience; just the voice of sheer exhaustion and sadness. About 3 am, I felt able to take over, so Hannah curled up and I got the easier part of the night, because Mallorie would actually sleep for hour-long stretches, and was no longer really moaning. While I was at work today, and John and Jacob (8) stayed with Mallorie, Hannah took a nap at home to prepare her to help me again tonight. We're hoping the steroid business, or whatever it is, won't be such a deal tonight, so maybe both of us can sleep between feedings and such.

I think that along with the gift of every special baby, should be a daughter like Hannah. I don't mean to imply that all of our children aren't unbelievably helpful and smitten by their youngest sibling, but tonight I'm loving me a sweet girl named Hannah. Totally, you "special mommies" out there should ask about getting a Hannah.

Even if I had better than a cell phone camera with me, I don't have the ability to get it from the camera to the blog here at the hospital, but if I did, I'd put one right here.

Tuesday, December 30, 2008

Hospital

We went to the ER yesterday evening, because Mallorie was having another night like 2nights before that, only this time the breathing treatments, etc, weren't easing up her breathing situation. We stayed the night in the ER, where nurse Kristen got a great scalp IV again (only one attempt needed), and medications and treatments were able to be given. She tested positive for RSV infection, and pneumonia again, as well.

So we are back in the hospital for now, and would appreciate your prayers that our little one returns quickly to full health. She is SO much better today than she was last evening.

And I was awake all last night, and only got to "doze" for about 1 hour (between 6 am and 7 am), and had some work to do today (for my job), so there was no catching up by a nap today. I expect I will not have trouble sleeping tonight!! Trouble waking up for feedings, maybe, but not sleeping! :)

Sunday, December 28, 2008

A Good Night

Some breathing treatments throughout the day, cool mist humidifier, saline in the nostrils followed by suctioning, and a last-minute brainstorm (a couple of neosynephrine decongestant drops, for the obligatory nose-breather), and last night went pretty well, after all.

There were only some low oxygen dips when the oxygen tubing slipped out of place. We thread oxygen tubing through the "collar" (ribbon) of a stuffed animal and place the animal near her face at night, because she has a tendency to have low oxygen levels during sleep. A couple of times she also needed to be repositioned, to help with her breathing, but all in all, it really wasn't a bad night. John's at work, and it's so cold outside, I already know we won't be going to church (again).

I'm so grateful, though, that ER wasn't anything we had to worry about. Despite Hannah's wringing of the hands and Matthew telling me he'd rather have us take her to the ER than just waiting until she stops breathing. Um, yeah, me too. But guys, if it's croup or something like croup, I think I might be able to handle this one.

And like any mom who's been up at night dealing with sick children, I'm trying to figure out how to schedule a nap somewhere today. :)

Saturday, December 27, 2008

Normal childhood illnesses, hurray!

Well, not so much "hurray," but it's not terribly far off. A few weeks ago, it was pneumonia. And now, I think Mallorie has croup. She was making some funny noises last night, but I dismissed them as the return of reflux. Meaning, I was trying to live in denial land about the maybe-reflux, and not listen much or get myself overly stressed about that coming back, because that would be really easy to do. Even though relapses of stuff is truly not the end of the world.

I say, I "think" croup, because Mallorie is a steadfast nose-breather, and if she gets congested, the noise and effort of her ONLY breathing through her nose complicates things a bit. The noise of breathing nasally through stuffy passages might have disguised another noise that that might have been the tip-off, that of breathing through a swollen throat. Since ALL our kids have been prone to croup, if I had heard the high-pitched noise that comes from breathing in when the swelling is particularly bad, I'd probably have had her in the steamy bathroom during the night. Or, if she'd had a cough that sounded more like classic croup. But she didn't.

What she had was noisy wet sounds that I thought were reflux, snoring sounds as she strained to breathe through her stuffy nose, and restlessness. Lots of restlessness and little sleep. Poor baby.

So it took her brother, who currently has croup (about his 3rd morning to be hanging out in the steamy bathroom), to tell me this morning that she probably has croup. And after a couple of breathing treatments and spa time in the steamy bathroom while I took my shower, she's breathing much easier. So she probaby does have it. And that would help to explain the 102.8 fever, the fretting all night, the battle with really low oxygen saturations all night, and the frequent bouts of apnea, which made me think we needed to get another caffeine level, after we just did that about a week ago.

My inner freak-out mommy is calm, for now, because croup is normal ... for us, at least. And usually fairly manageable with home treatments, like a cool mist humidifier. If it's not manageable tonight (in our experience, the 2nd night of croup is the worst), we will head to the ER. Figures, though. If this weren't a weekend, we'd be in the pedi's office begging her to consider a bit of oral steroids to head off the 2nd night struggle.

So the hurray part. Well, a few weeks ago it was a raging diaper rash from trying to add a bit of formula powder to add calories to Mallorie's milk. Then it was pneumonia and a crazy high fever, for which she needed a brief hospital stay. And got a normal IV in her arm. Then diarrhea and continuing diaper rash from antibiotics. And her managing not to get the sickness that landed me in the hospital for 24 hrs of IV fluids last weekend.

And now maybe croup. These are not the sorts of things that send me running to the edge of the cliff screaming that I can't do it, and that I'm surely going to mess her up.

Like when I pull out her new g-button, all by myself, and can't put it back in. Not even after talking sobbing being unable to talk to Dr. H on the phone.

Yeah. I'm sure Cathy is waiting on me to fess up to that one here, but I'm not ready, yet. It might have to be a Monday, so I can say it wasn't me.

I am posting a picture from another day, because Hannah won't let me post any from today. Apparently, Mal's sick day ones are not so good - not by big sister standards.

Monday, December 15, 2008

Not Me Monday! Dec. 15


While we were at the pediatrician's office this morning, I did not just tell Mallorie's pediatrician (when she said the way I was kissing Mal, I'd end up catching whatever she had) that I was TRYING to catch it, to create more antibodies for her in my milk. 'Cause if I said that, I'd have been pulling that one just out of the air! To have an answer. Even as a kid, I always never had to have the last word.

And when I said we ALL kiss her, ALL the time, on her mouth ... but not, of course, when WE are sick, Dr. B did not tell me, good, because she'd beat me up if she heard I did that!

She also did NOT tell me I'd be pumping milk for the next 14 or so years, because Mallorie's response to formula trials turn out so badly, and we shouldn't hold out hope for her doing any better with cow milk.

If she'd said that, it would NOT have made me, for the first time, ever, wonder when WILL I think I should quit?

And all these interactions this beautiful winter day absolutely, positively did not make me so happy and filled with peace to know that:

Mallorie is healthy, too healthy to have been brought into a croupy-sneezy-snotty waiting room this morning.
My freezer has milk in it, so it's OK that my supply dipped some more last week, and I'm going to have to work like crazy this week to bring it back up.
The frozen milk is not mine, but lovingly collected and preserved by other awesome women whose generosity I could never really deserve. They simply share what they can out of love for other mommy's babies. Amazing.
Mallorie is still slowly gaining back the poundage.
Dr. B is OUR pediatrician.
And while I waited in the waiting room overflow area to see whichever doc in the group was available to see us this morning, I did not watch a mom go up to the receptionist window and ask for an appointment with Dr. B. And when she made a sad face about there being no openings in Dr. B's schedule at a time when the mom was hoping to get in, so she accepted an appt with another doc, in NO WAY did I turn to Tracy and whisper to her, She wanted to see Dr. B. Join the club. Stand in line.

Nope, not me. I didn't say that, because that would have been immature and just SNOTTY!

And I absolutely, positively was not grinning, because we were NOT leaving, if we had to wait till noon or later. Even though we had no idea which doc we'd even be seeing. With my healthy girl. After waiting in a sick waiting room full of children who actually were sick. Because it's totally NOT THAT COOL to even hope for a chance to see the amazing Dr. B. (Am I right, Cathy? We don't ever tease each other with emails and texts that say things like, "I get to bring my kid to Dr. B today." We don't, right?)

Saturday, December 13, 2008

Healthy living

Yesterday, I was a little nervous about posting an update. I had to go to work, and in the afternoon I got a call that that Mallorie was running a fever. I called the pediatrician's office, and was told if she seemed like she had any respiratory difficulties, she had to go back in. So I didn't want to post anything, and just waited to see.

She had the best-ever night. She isn't having problems with her breathing, and something else. I've mentioned the problems with the old gagging/reflux/vomiting stuff; she is having none of that, at all! And the secret, I really believe, is the switch to Prevacid.

I'd asked to switch to it months ago, after hearing several parents in about a 2 week period tell me that their children had such reflux/vomiting issues, until they switched to Prevacid. So we got the med, but partly because so many of us get involved in administering Mallorie's meds, we seemed to keep forgetting NOT to give Zantac, and TO give Prevacid. Once the Zantac was given, I felt we couldn't do the Prevacid, so we kept not being consistent with it. OR, maybe her near-continuous gagging was related to her still being so close to the time on the vent. But for whatever reason, we never saw a big improvement.

Then, I did some more home visits where I heard parents talking about good results from changing to Prevacid, so I decided to retry a couple of days before she got sick. And when they asked at the hospital about home meds, I just said her meds included Prevacid, and not Zantac. So the time she was in the hospital (and since), she's had an honest trial. And no. More. Vomiting. At all.

No gagging, either. None of us can stop talking about it. I'm so tuned into little noises, and keep asking, "Is she spitting up? Can someone look?" But nothing, not even the watery eyes telling us she's refluxing.

At this rate, if she keeps taking in her food and doesn't vomit the feedings up, she can't help but gain weight!

And another thing. I think she also sleeps better because her new ultra-cool g-button is so easy on her tummy, and she's so much happier as a tummy sleeper. In fact, she would just as soon stay on her tummy ALL NIGHT, and when we turn her to a side, eventually she's going to let us know she wants back to her tummy. I think much of the frequent repositioning she used to require throughout the night had to do with the discomfort of sleeping on a hard, raised lump, so we did side, side, tummy, and kept the rotation all night. Now that the Mic-Key "lump" isn't there, she wouldn't mind if we NEVER repositioned her. Just change my diaper with me here on my tummy, pour some milk in the syringe, and see you in the morning. Thank you very much.

We had to pick her up and MAKE her join the world this morning at about 11 am!!! We'd already done her meds, morning feeding, breathing treatments, and blood pressure measurements, all with her snoozing on her tummy, and nothing would make her decide to wake up on her own. Oh, yeah, Dr. H is still her hero. Big time.

Thursday, December 11, 2008

One For the Road.

Mallorie is getting one more dose of antibiotic, and then we can leave. Yay! Thank you all for your prayers.

Mallorie's (*and her siblings') first "real" snow!

Tamara (http://www.carepages.com/carepages/ConnerLemus) emailed me a little bit ago; apparently, our kiddos were feeding about the same time of night, and she wrote this:

I just wanted to let you know.....IT'S SNOWING!!!!!!!!!!!!!!!!!!!

It is beautiful. I got up to warm a bottle, and happened to glance outside the window by the sink in the kitchen. Everything is white and beautiful. I gave conner his bottle, and put on my shoes and grabbed the camera.

It is snowing big, soft, white flakes, and it is beautiful!! I took load of pics, which I'll post on his carepage tomorrow. I even put a paper plate outside to catch some for alyssa. I'll get up in a few hours and put it in the freezer. I ALMOST woke her, but figured that would be irresponsible parenting, since she does go to school tomorrow. If I had, I would have had to do a Not Me Monday, also.


And Chona (Mal's nurse tonight) gave me a similar story, and said that people are outside throwing mini-snowballs at each other. So I did what any responsible parent would do. I woke up Hannah and sent her outside to see what it looks like outside the hospital, and called John so he could wake up the other kids. He's no more responsible than I am (meaning he's WAY better at being impulsive, making him a great dad!), so the next thing I know, I'm getting a call from Hannah (outside), letting me know Daddy and the other kids are on their way to the hospital so they can go outside and have a snowball fight and make snow angels. They are at an all-night pharmacy, buying batteries for the camera!

See why I love him? He has never quite lost that child inside, and the kids are better off for that.


Now he'd better get them back into bed before we have more kiddoes with pneumonia!! Chona says we'll have to open a suite!

Wednesday, December 10, 2008

Still Here (or, Button, Button, Who's Got the Button?)

Sorry; I had to leave for work today, and didn't have a chance to update till now. Discharge was postponed till tomorrow, to wait to see how the chest x-ray and labs look.

Dr. H. came in while I was out, and put in the cool new g-button, though. I cannot wait to see what a difference it makes in the skin on her tummy. I'm with Jessica; I hate the Mic-Key®!

She got this button. It's called the Mini One, and has the best features of a Bard® button (low profile, has anti-reflux valve, has the silicone anchoring plug) and the Mic-Key® (the feeding tube locks in place), all rolled into one. SOMEONE apparently knows how to listen to parents! In one fell swoop, Dr. H's description of this button dismissed all my reservations about making the switch. And I was asking about putting real foods in through this button ('cause Dr. H isn't all issue-laden about things like that), and he said, no problem. And then I read this in the Caregiver's Reference Guide: A gastrostomy tube is a convenient, comfortable and
effective means for delivering nutritional formulas to the body. These formulas are either commercially available or homemade using a food processor.
This is in reference to feeding through a g-button, guys. Cause we know some people have the thought that this wouldn't be OK.

And also on the website, it says this button is compatible with the Mic-Key® feedsets! We won't even have to figure out which supply company will get extension tubes for us! I can hear the sound of the crowds running out to their pedisurgeons' offices for these things!

Yeah, I know. I sound like a crazy person g-button sales rep. But it's that exciting. Though I guess you gotta have a life that revolves around tube feedings to get that. Wait, no. Dr. B's colleague who was covering today, the inimitable (other) Dr. H was pretty excited about it, too! I distinctly recall him using the phrase, "really cool" when we were talking about it this morning. It's not just me.

Oh, the answer to the question you are thinking of asking: I found the ® on the website, too, and thought it was fun to put to use in this post.


I have to add this addendum. I went to check out the g-button site from the link I put here, and realized that they show one scary-looking contraption, and no one would know from that what the button really looks like! The button is like the drawing on the left side of that page, and not at all like how the blue and white photograph looks. The blue/white bow&arrow contraption at the top of the buttons is actually an applicator that the doctor uses to place the button into an opening that already exists in the tummy of someone who's had a tube. The actual "button" is the smaller portion at the bottom. Here is a side view of Mallorie's new button (the bottom picture). The actual visible portion is the very top, the horizontal part of the "T." To look at her tummy, it sort of looks like she has that little tab that you see on blow-up beach balls. It's see-through, soft silicone, and if you had ever seen her other button up close, you'd notice it's much less obvious. And since Mallorie is preferentially a belly-sleeper, a soft, flexible external portion of a button device is much kinder to the skin of her belly.

I know; way more than you needed or wanted to know. But you have to trust me. The pedisurgeon Dr. H is Mallorie's new hero.

Tuesday, December 9, 2008

Old friends

Mallorie's daddy and big brothers watched her this evening so I could nap a bit. There had been a shift change, and Mallorie's nurse tonight is Chona, who took care of Matthew when he was admitted at 4 months of age with croup. Watching Chona and the other nurses during that stay was what convinced me, as a new nursing school graduate, that I wanted to be a pediatric nurse.

And tonight, Matthew was helping his dad and Chona by measuring out Mallorie's home medications, checking the blood pressure before giving the BP med, changing diapers, helping to feed by tube. What a difference 11 years makes.

It's so neat to have Chona watching over Mallorie. She's one of the smartest and sweetest persons I have ever known.

And I think Ida DID try a scalp IV today! Turned out not to be such a great vein, but if I'm correct, then it might have been another first! Ida was the nurse I was working with on the very memorable day when I started my own first scalp IV, years ago ... because there was a little girl with a HUGE vein staring at us and no good IV sites elsewhere, and Ida told me, very sweetly, to go ahead, if I wanted to try for it, because, "I don't do scalp IV's." Never say never.

We have an IV!


Thanks to very cool technology (using ultrasound) and plenty of talent, we have a first: an IV in the arm! Imagine looking at a monitor screen while your hands are doing intricate work elsewhere. You should've seen it.

So we'll stay another day.

Good thing the people are so nice and we like it here and all, because we are not going home today.

Let's see. Scalp IV came out when someone (too late for a "Not Me Monday") was giving Mallorie a bath after she pooped all over my clothes and her own entire body. We won't talk about who was giving the said bath, and obviously was thinking we were going home today, anyway, and maybe wasn't careful enough about the site.

The requirements for discharge were no fever and acting better and "like herself." She got the last 2 parts, but keeps wanting to run fevers. I like this doctor, though, because he does what he feels most comfortable doing, and I have to agree with him, that full treatment now beats going home and maybe having a relapse.

So they will be restarting the IV in a few minutes. Please pray; you all know that starting an IV on this girl is a true test of the skill of medical types! But nurse Sharon is caring for her again, today, and she's already looked at Mallorie's forehead, and said in a very positive tone, "I see a good vein right here."

(Ida, I already told her you don't do scalp IV's and she's going to have to find someone else if she needs backup.) :)

And my long-term buddy, Dr. H (the pedi surgeon), might be able to change her g-button to a new and improved version ... today! So we have plenty of stuff right here to entertain ourselves. Cathy: he says it has the good features of the Bard buttons, plus the tubing locks in like the Mic-Keys! What more can a girl ask for? Plus, the entertaining personality of sweet Dr. H.

Ida and Sharon are here, looking all over for IV sites. Pray.

And I have help again.

Restless

As far as Mallorie's breathing goes, she is better today than yesterday. And so far, no fever this morning. The doctor said if she is more herself and fever-free today, there is a possibility of discussing discharge this afternoon.

Despite the lovely sleeping baby picture, there was not much sleep to be had last night, after all. I woke Mal at 1 a.m. for neosynephrine drops, and then she stayed awake, restlessly tossing her head and dropping it on her pillow, and moaning, making me concerned about losing her IV. It lasted just long enough for me to have requested the nurse call and ask the doctor about something to help her get some sleep ... which I regret, because I have always hated the idea of waking a doctor in the night for anything other than an emergency. Of course, before the answer was even received, Mal settled down, and was able to return to her crib and fall asleep at about 4 a.m. So we woke that poor doctor unnecessarily! Mallorie slept till about 6:30, when she needed to be seen by the doctor (same one we caused to be awakened, so fair's fair) and the drops again, and now she's tossing around, and babbling and sort of crying.

My vote is for HOME today sometime! At least there are more people there to take turns holding and soothing, and no IV sites to guard. I am so grateful to my family for the way they all help. Hannah held Mallorie and stroked her head till she fell asleep last night, watching to make sure Mal didn't dislodge her IV with all the head tossing. She's now crashed on the couch here in the room, and I hope she catches up for the sleep she missed holding her sister and afterward, trying to sleep in a chair. Matthew stayed here with me to help the night before, and Carley has been faithfully mixing up batches of milk each day (fresh plus frozen plus electrolyte additives) so I haven't even had to figure out the calculations or mess with the measurements or washing the bottles. And Jacob's just been being cute. We think he still thinks he's the baby of the family, sometimes. He's usually the one who gets Mallorie's blood pressure readings and records them morning and night, so we need to be home so he can get back to his routines!

Of course, John would be here if he could, but I wouldn't get any more sleep being home, anyway, if Mallorie was here and I was worrying about her. So he's managing the things at home and going to work each day, too.

So please pray for enough improvements for Mal to go home later today. I have a long day at work tomorrow, home visits that could not be rescheduled, so a good night of sleep at home for all would be wonderful! As wonderful as it has been here, we'll be SO happy at home, too!

On the other hand.



I believe we will be sleeping, after all. :)

Monday, December 8, 2008

It Pays to Know People!

Thanks to Cathy (Annabel's mommy), some of you already know we are in the hospital with Mallorie. I wanted to let you know she's much better, though we're still here.

Mal got some sort of respiratory illness toward the end of the past week, and by yesterday morning, it looked like she was really working at breathing. I had been flushing her nose with saline, and suctioning her throughout the night, and gave her extra pedialyte to help loosen her secretions, and just felt she needed more of the same in the morning, but when I was done, it just wasn't enough to ease her breathing, and I was worried about how much effort she was putting into breathing. (It didn't help that I'd dreamed in the night that she had been intubated and was on a vent at the childrens hospital where we had spent February, and had pulled out the tube and removed part of her mouth ... and a collection of residents were arguing about who got to sew her mouth back on!)

At one moment Hannah, 14, (who panics even more than I do) took Mal in her arms and announced, "We need to go to the hospital," and Matthew, 11, asked, "What if it's croup? I know when I have that, I feel like, This is it. It's the day I'm going to die, because I can't breathe." And then a second later, Cathy asked in a text, "Does Dr. B know?"

So then I panicked, because I had been thinking of sending my husband to the pharmacy to buy Neosynephrine drops, ... and everyone around me thinks it's more serious. By the time we got to the ER, we learned her temp was over 106, and x-rays showed pneumonia, so she got admitted to "heaven." (HANNAH JUST TOLD ME TO STOP RIGHT HERE, because that sounds wrong. I meant to heaven on Earth, I guess.)

Both of the hospitals in this town are amazing, and I have worked in the pediatric units of both, so I know the quality of care better than most people. But what I haven't experienced in ages was the blessing of watching my child receive compassionate and excellent care from one of these special pedi units or ER. From Susan in the ER, who listened to how Mal is a difficult IV start, and then quickly and effortlessly started her IV in her usual place (scalp), to Sharon, Betty, Angela, Angie, Helen, Mary Ann, Mary, and Niyah, who have been in and out of our room in the past 24+ hrs, providing care for Mallorie and company for me, and keep telling us how beautiful our sweet girl is, I have never felt "alone" for a moment.

I told a friend this evening that I have felt like we are staying in a wonderful hotel, and dear friends are caring for our baby. Staying in a local hospital is SO much better than going a couple of hours away to the big childrens hospital. Here Mallorie's care is overseen by someone from Dr. B's group, and although we personally love her more than anyone in the world, almost, ... each doctor in the group is a caring and excellent pediatrician, so there is continuity of care and a great sense of safety, no matter who is the current hospitalist.

I was talking with Cathy (Annabel's mommy) this evening, and she asked me, "Can't you get on the computer while you're there? Do you just not want to?" I had no idea what she was talking about, but apparently, you can use the computer in the patient rooms in this hospital??? So here I am.

And here is Mallorie on happy steroids, which is making me wonder how Hannah or I will get any sleep tonight. :)




Thank you for your prayers. And thank you, Cathy, for letting people know through your blog. Thank you, Katha, for letting the co-op moms know. And thank you, Cathy and Dr. B for getting Mallorie onto the ACTS community prayer chain. I'm loving me some sisters right now.

And I guess now that Cathy filled me in on the big computer secret, if we don't get to go home soon, I may be able to update, myself! And you all know me and my cell phone pictures.

Wednesday, December 3, 2008

Happy Birthday, Tristan

Once upon a time there was a family who were eagerly expecting a baby boy, but partway through the pregnancy, they were told their boy might not be born alive, or if he was, he might not even take a breath. Or he might stop breathing very quickly. His parents were very frightened and sad, but they loved their unborn boy, and wanted him for as long as he would be with them. They planned for him, and loved him, and when he was born, he breathed! He breathed so well, he went home from the hospital to his family's home. He kept breathing, and every day the family celebrated his life and his breathing, knowing he might not always be with them. His crazy mommy took hundreds and thousands of pictures, and tried lots of clothes on him. His parents asked lots of questions of their baby's sweet doctor, and of anyone who might have ideas about how best to care for him.

The sweet boy lived 56 glorious days, and then one day God asked him to go to his forever home, in heaven. His family now eagerly waits for the day when they will live with their baby boy again.

Those who were blessed enough to get to know him, even from afar, miss him very much.

You can go to his blog if you want to read the beautiful story of Tristan H.

Monday, December 1, 2008

Poppy Joy

One year ago today, a dear friend gave birth to a sweet girl named Poppy Joy. Poppy's birth was anticipated with much joy and with some sadness, because her parents learned before her birth that she had Trisomy 18, and no one knew what would happen that day.

Poppy lived three very full hours, and in that time brought so much joy, and God used her life to showed us all how precious three hours could be.

You can see a video of her life here.

Today is also the day that Poppy's family finalizes the adoption of Poppy's and big sister Marianna's new sister, Adrienne. Today is a big day.

Sunday, November 30, 2008

Zoe means "life"

Please visit this blog to learn about Zoe, a beautiful little girl with Trisomy 18, and her parents, Jen and Greg, who have spent their Thanksgiving holiday in the hospital where Zoe had heart surgery. Despite the prevailing medical opinion that a child with such a diagnosis is "incompatible with life," and despite being told that they would have a hard time finding anyone willing to treat her, Zoe's parents decided that if what threatened Zoe's life might be correctable, she deserved the chance. God brought them into contact with medical professionals willing to treat Zoe, and she had surgery on Tuesday.

However, she has had complications since that time, and is currently in the PICU on a ventilator. My friend Tamara, mom to a "heart baby" (Conner), and someone who follows the story of several babies born with congenital heart defects, can tell you that these surgeries are scary, and things can get complicated ... having absolutely nothing to do with a genetic diagnosis.

Please pray. For Zoe, for her parents, and for her many siblings who are separated from their beloved sister, and worried in the way that only siblings can be. We know, from experience, the great power of prayer, and that God is mightier than scary statistics. May God be glorified in beautiful Zoe's life. And return her, safe, to her family!

Monday, November 24, 2008

Not Me Monday! ~ (Calling all moms and dads: feeding advice needed.)

OK, we're officially in over our heads.

Mallorie's lost about 1.5 lbs ... probably in just the past month. I was going to write this out honestly, but just realized I'm going back and changing the title (done) so I don't have to own up to all this. :)

I can admit this: When Mallorie was getting ready for surgery in September, I decided, single-handedly, to put her back on an all-milk diet. Breastmilk, not cows milk ... in case you want to go all medical on me. I felt it was a great plan for avoiding the problems (gagging/reflux/vomiting) we run into when we mess too much with her diet, because the one thing we know she does NOT struggle digesting is breastmilk. And it was also a way to make sure she was getting the great immune-boosting benefits of human milk.

This was not the problem. This plan did great; she kept her wt up (and I think gained a tiny bit), wasn't having digestive problems, and did great recovering from surgery. She even continued to do great when I sort of "forgot" about The Plan, and continued her only on breastmilk, because, heck. She was doing so well! She was healthy, energetic, and her health was fine. And since shortly after my supply dipped after her February hospitalization, I discovered the generous gift of milk from other mommies who allowed us to have some of their excess (Despina, Lyanna, Michelle, Tamara), I wasn't really stressed about The Plan or the timing of it all.

Here I'll start "confessing."



While I was busy forgetting about The Plan, I did not realize that she was really only refluxing at night, so I didn't decide to just eliminate a nighttime feeding so she could go a longer stretch at night between feedings ... but forget that she needed to make up those calories elsewhere.

I surely didn't focus so hard on replacing total fluid volume to prevent constipation(so I gave extra water and Pedialyte pre-feeds), that I forgot everything I ever was taught about nutrition.

I didn't fail to even think about calories until the Early Childhood dietician came by with his portable lie detector scales.

I didn't sort of shrug when I realized my error, and think, hey, she's still healthy, and sort of slowly edge back on The Plan, until a couple visits to Dr. B required something of an admission ... like, OK. I think the only reason she lost weight is that she's been getting fewer calories. (To which Dr. B replied, Ya think???)

It certainly didn't take me that long (like only a week between first polygraph weight check and the one where Dr. B pulled the acknowledgement out of me) to realize that just maybe I needed to add back the missing feeding, and then figure out adding solids to her feedings.

Because I'm totally not that dense.

End of confession. Now for the request. There are 6 yrs between Mallorie and her brother who came before her, and I just don't remember these things. Heck. I was the whatever-it-will-all-work-out mom when it came to fitting in the solids, and I just don't think it was this hard to figure out. What are we doing wrong? Do other babies spit up sometimes when they are transitioning to solids? I remember being told to try small amounts of solids, and only one new food at a time, but was it really that hard getting to a fairly high percentage of solids per meal? I honestly don't remember. I do know I was the mom who (on principle, and I'll admit that) waited till seven months old before starting any solids .. because I was told to start at four months (by an antibreastfeeding doc), then surely/absolutely by 6 months ... :) But I simply don't remember all this gag/vomit/reflux, even with her refluxy brother.

So you parents of non-tubefed babies, did you have any struggles with the transition, and if so, what helped? Because what she is struggling with is getting to a normal (solid) foods diet. At least we know tubefeeding formula issues aren't part of the problem.

And you parents of children with tubes. Is this something typical of just having a tube? I'm having trouble seeing it that way, because with her, the bad problems came first after a long hospitalization, and then with the addition of certain foods. And they seem to go away when we identify and eliminate certain triggers (like we know she can't do milk or eggs right now).

But obviously, I'm in the dark here, and not sure about much of anything at all.

Monday, November 17, 2008

Not Me Monday!



This afternoon, in the middle of Mallorie's speech therapy, I did not notice that her fingernails had a week's worth of extra length,

then look at my own nails, and THEN realize that Jacob was at that very moment sitting in a class at the all-day homeschool co-op, with nails that looked like this:

I did not then make a mental note (which will be forgotten, as it was not a
written note) that I MUST clip 59 nails tonight! Because we are going to see the illustrious Dr. B tomorrow. And of course she has never told me that dirt on faces she can overlook, and messy hair she can overlook, but the one thing she cannot stand to see is untrimmed, dirty nails on children.

And, of course, I do NOT actually concern myself what she thinks.

And it did not occur to me that it might be a little odd, for me to actually care about things like this, after all these years of parenting.

Good thing none of this is actually true. Right?

And I am also not still using my cell phone to put pictures on here because I haven't the time patience ability to use a real camera and download the pictures like real blog owners do.

And I do not still have to go here every Monday, in order to figure out how to participate in this therapy.

And I did not smile writing "59 nails," knowing most people reading this will not understand. :)

Monday, November 10, 2008

Not Me Monday!!

I love McMama's blog, and her, for coming up with this Monday morning therapy.

Let's see. I did not panic after publishing last week's Not Me Monday post, and eventually remove the "disclaimer" that had been at the bottom of the post before too many people read how my mind can wander if I'm sleep-deprived.

I did NOT fall asleep for 3 hrs on Sunday, after returning from the "retreat" I got to do this weekend. I mean, retreats mean rest, and hours and hours of refreshing sleep. So I returned well-rested.

I did not forget to pack PJ's for the retreat, and then just before leaving on Thursday evening, grab my oldest pair of torn-up sweat pants and t-shirt, and then feel so relieved on the last morning that I had woken up early enough to have showered before it was "time" to rise. Because wet hair does not beat tattered "PJ's" on any day on retreats.

I did not laugh out loud this evening, when I re-read the "Retreat" post from Thursday and saw this: But you know I occasionally seem to worry, anyway, .... And I cannot hear anyone who knows me in real life, reading that and gasping, "Really?? You??"

I was not at all an anxious freak about going away this weekend, nor did I have flashbacks about that NYC "Wilderness Experience" I did years and years ago in college, during which Nancy Mean dropped our class on 42nd street (not The New 42, the Old 42nd Street, the "Deuce") and told us to spend 2 hrs "sightseeing," and then find our way by subway to our next destination. At night. Or remember getting dropped off in the middle of the woods to stay for 24 hrs with only water, pencil and paper, sleeping bag, .... and no toilet paper. So I never associated the secrecy of all of this event with those experiences. And I do not wonder, after all these years, why I was the one always pretending to be unafraid on those wilderness experiences, because I was by far the bravest retreatant to attend this weekend. Untold numbers of people were blown away by my courage, wild dancing, singing, and generally loose fun-loving personality!

Because I had no anxieties about the unknown elements of the retreat I was to be going on, I did not just a few days before I went, bully/annoy/nag/cajole my friend whose name I cannot mention here, or my daughter (again, not mentioning names and she's NOT a blog contributor) to give me just enough details to calm me down. I would never have done that because they were sworn to silence, and I have no fear of letting go, .... not me!

And I am not feeling that words would be inadequate to express the gratitude I feel to so many new sisters for welcoming me into their hearts and lives, and to some of them for expressing surprise and disappointment (in a totally complementary and laughable way) when they found out somewhere at the end of the retreat that I was not Catholic (because it was a Catholic retreat). I didn't chuckle when they told me that they think I'd make "an awesome Catholic." I felt totally loved. Ooops. I meant to say, I didn't feel at all loved, not at all. And I didn't have the best time I've had in several years. Nope, not me!



And Becca, Mallorie's speech therapist, didn't seriously dance and squeal this morning when I told her that Dr. B doesn't mind us feeding Mal without a swallow study.

Thursday, November 6, 2008

Retreat

I have an amazing opportunity to leave for a few days for a religious retreat. Back in May, a friend suggested that I would enjoy the experience, and I began thinking about what it would take to make it happen within my level of comfort, "one day." Initially, I couldn't imagine it happening at all. That's because, with Mallorie demonstrating apnea from her first day of life, my life since her birth has revolved around watching her breathing. It's more than the normal, have a newborn and be afraid to leave the room to take a shower, because what if the baby stops breathing? This baby does stop breathing.

We've had some scary times, times when we have had to breathe for her. And a night when I woke (twice in the same night) to sounds I didn't recognize and Mallorie looking like she was having a seizure, because I had become so sleep-deprived that my body in self-preservation mode, just slept though the alarms and incorporated the noises in my dreams. That night, she had had so MANY episodes of apnea that I'd stopped hearing the pulse ox alarm, and it was only the grunting noises she was making (and God) that woke me in time to "bag" her and get her breathing again.

We have come a LONG way since those early days. For one thing, we learned after that really scary night, that a really low caffeine level was allowing the apnea to rear its ugly head, and we have since become experts at knowing we have to bring her in for a blood level any time she has a days or nights of apnea in a row. And since she's not growing as fast as she did when she was a newborn, she doesn't need dosage adjustments as often, anyway. For whatever reason, apnea hasn't been the major discussion point in our lives in ages, but it is still there. And I don't sleep deeply at night. Just as in the early weeks and months of having a newborn, I still don't pull the covers up too closely around my head when I sleep, because I need to be able to hear the alarm, or the quiet little noises Mallorie makes just before she starts spitting up, so I can give her some water to rinse her throat and stop the cycle, or reposition her to make her more comfortable and less likely to aspirate. And the others in our family seem to not hear her apnea alarms as easily, so I just don't leave home overnight. Ever.

So back in May, when I thought about what would be barriers to me attending this retreat, I thought about the nighttimes and wondered how I could ever feel safe if I was gone at night. I thought maybe ... if we could find nurses or someone else to stay up with her at night. So when the OB who cared for me during Mal's pregnancy also mentioned the retreat, I mentioned my concerns about nighttime, and wondered if I could bring my breastpump. (I had heard you have to give up your keys, watches, phones, ...) She said the pump was OK, and they'd try to help figure out the nighttime situation, and later she got back to me and said she had nursery and L&D nurses who said they might be able to watch her at night. One was one of Mallorie's many "moms," Helen, who was the nurse in charge the day Mallorie was born and present at her birth.

I know. Who ever gets kindnesses like that?? So I began to think, I could go on a retreat.

But over the past few weeks, I got a little crazy over how in the world I, in my OCD-ishness, was going to type out a "care notebook" and include every little thing someone would need to know to care for Mallorie while the rest of the family slept. And I was going to create that notebook in my "spare time." (Do any of you moms out there have a template? Have you done such a thing?)

There are just so many things I needed to include, even if all meds are given before the family goes to sleep. I was thinking I needed to add pictures of her best sleeping positions, explanations/pictures of how to "prime" her feeding tube instead of plunging from above (to avoid stimulating reflux), ways we've learned to stop the gag/vomit cycle, .... You get the idea. I was dreading the process of getting ready so much, and I was going to need 2 retreats just to get over the stress!

Then Tracy, our sweet friend/nurse who already knows Mallorie so well, told us she would be happy to watch Mallorie all those nights. So now, instead of writing out instructions for all those amazing volunteers, all I have to do is ... well, nothing!

But you know I occasionally seem to worry, anyway, so if you don't mind, please pray for Mallorie's health while I am away, and for me to just let go of the worry and enjoy the experience. The other kids, I know can survive illnesses and bounce right back. Truthfully, probably Mallorie can, too. But you know. I like to try to feel like I've got everything "set up," so nothing can go wrong.

Exactly 21 months ago today, I had to open my hands and let go of control, in somewhat the same way I feel like I'm being asked to do today. Though my sweet doctor tried to give me control of parts of the experience that day, truthfully, none of us had control of what God was going to do in that room on that day. And God did just fine on His own. :)

So today, I'm loosening the grip again, and going on a retreat. My first one ever, by the way!

Wednesday, November 5, 2008

Crazy mommy and crazy sister

Hannah brought Mallorie to me about 30 minutes ago, with panic in her voice. "Mommy! I was watching Mallorie, and she was sleeping on her tummy, and let me show you something."

Here's what I heard.

MOMMY!! MALLORIE!!!! OH, NO!!!! LOOK WHAT'S WRONG!!!!

I was quite short with her, because I was trying, myself, to silence the alarms going off in my head. I let her show me whatever it was she wanted to show me.

"Look. I think there's wrong with her neck or her arm. She can't move it right, or hold her head up or turn it like she did before."

I "heard", HER NECK AND/OR ARMS ARE BROKEN OR OUT OF SOCKET!!! MAYBE IT'S A SEIZURE CAUSING STIFFNESS!!

In my head, I was already halfway to the ER in our car, and texting the pedi on the way. I took Mallorie from her, and the barely visible nurturer in me who knew she was supposed to be calming Hannah, stopped snapping at her and said, "She's fine." And let Mallorie wake up gradually, and soon she was smiling. Her neck and arms are fine. And she's never had a seizure in her life. I deleted the saved text.

So tomorrow morning, when you read my post, you will understand. There's just a lot of crazy in this house.

Monday, November 3, 2008

Not Me Monday


Go to www.mycharmingkids.net to join in.

I recently learned about this therapeutic way to share each Monday about your previous week, so that you can move on into a new week, completely purged of whatever you wish to leave behind. Here goes.

Since Mallorie has not yet had her swallow study, I most certainly did NOT on Sunday let her taste a little bit of Gerber Turkey, Rice, and Garden Vegetables Dinner with her (gasp) mouth.

I did not and would never let the other kids see me do anything like this, either.

I also did not have Hannah participate by letting her puree the Stage 3 food in the Magic Bullet until it was a nice, thin consistency.

And, of course, I did not grin deliriously smile the rest of the day, knowing that turkey means she might be "tasting" Thanksgiving dinner, um, breast milk, in a few short weeks. If she is still in the mood, that is.

I would never have done any of these things, because I actually have to look her pediatrician in the eye one of these days on the 18th.

Oh, and Jessica, I absolutely, positively, NEVER put any of the leftover puree into her g-tube, because you, and Alex's GI, nutritionist, and speech therapist, (and Mallorie's Spina Bifida doc and the dietritician she brought in to speak with me) all recommend that you don't put food down the g-tube! And so that would be just wrong.

Maybe even almost as wrong as feeding her by mouth pre-swallow study.





And that is not Turkey-Rice-GardenVeggie puree on her sweet post-surgery face. :)

Jacob told me this evening, Mommy, I miss the Mallorie with the cleft lip and palate. So I guess I can admit that I do, too.

Sunday, November 2, 2008

Kenzie and Faith

Kenzie is back in her home away from home (hospital room!). Please pray for her and for Faith. She has some specific requests posted on her blog.

Saturday, November 1, 2008

Brief, but spectacular lives

I fell into bed last evening with this on my mind. That by mentioning only a few of the longer-surviving of the trisomy babies I know, to make one point, I left out the biggest part of the truth about what the fight entails. The literature about babies with conditions linked with the coined phrase, "incompatible with life" and termed "lethal," states that most of these babies will not make it to term. That most who do make it to term and survive birth, will not live long. We were quoted, days, weeks, 2 months. Because of this information, even most medical professionals do not have any sort of hope to offer expectant (or new) parents. And without hope, many will endure a pregancy filled with despair, added to the necessary grieving. Or will choose to end the pregnancy, thinking, "What difference does it make?"

What no one seems to share with parents is that there is hope. Hope that you will fall helplessly and madly in love with YOUR child, regardless of the number of days, hours, or months your baby lives. That your baby will look like his or her relatives. That you will love and kiss your baby's face, even if there is a cleft, or something else unusual. In fact, you will come to love your baby's club foot or cute hands as your favorite features. And if your baby is not a long-term survivor, you will long to relive the moments you shared with him or her again, and again. Or even "just one more time." That you will savor each beautiful photo of your child's life. That there will not be one moment when you regret the decision that you made to hope for life, and wait for God's plan to be unveiled. That you will see, smell, feel the weight and softness of your child, and know you have in your arms an intentional creation of God, a person who was created in God's own image. That God's image must not have to do with physical "perfection."

And if you ask the moms I know who have miscarried babies, or had babies born still, even they will tell you that each baby is remembered, and is indelibly written on their hearts. Most of these babies have names given by their families. You should read the long list of comments left on the Bring the Rain blog for National Day of Remembrance for pregnancy and infant loss to see the impact a brief life can make.

There is always hope when you open your heart to love and to God's gifts.

So meet the rest of the babies who have graced dear friends' lives, and whose brief, but spectacular lives have made a lasting impression on my heart. Whose parents chose to trust in the hand of a personal and all-powerful, all-knowing God who does not make mistakes. Who did not view their babies as incompatible with their lives, despite a diagnosis of Trisomy 18 or 13.

Meet Christian Dale, Eva Janette, Macie (T13), Maddox, Mary Grace, Nathan (T13), Poppy Joy. And I can't leave out Asher (who did not have T18 or T13). Each a precious child given God's breath for their time on Earth, and now comfortably seated on God's (apparently spacious) lap! Each fearfully and wonderfully made, and not a mistake to be "fixed."

See! I will not forget you . . I have carved you on the palm of my hand!
Isaiah 49:15

Friday, October 31, 2008

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.

Saturday, October 18, 2008

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.

Tuesday, October 14, 2008

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.

Sunday, October 12, 2008

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?

Monday, October 6, 2008

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?

Saturday, October 4, 2008

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.

Thursday, October 2, 2008

Preview (PRE-surgery)



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

Friday, September 26, 2008

home, safe and sound

We are home. Mallorie's surgery went so well, and she is recovering equally well. As predicted by the plastic surgeon, because the repair wasn't as extensive as the others she has had, her pain is much more easily managed with just Tylenol with codeine.

All kids should have g-buttons. I'm just barely kidding - Mallorie had advanced past Pedialyte and was back to receiving milk through her tube in just hours, ... without problems you'd expect if she needed to be fed by mouth, such as mouth pain, nausea, and sedation. Good nutrition is so important for healing after surgery, and without even waking or moving her, I was able to feed her through the day and night, and give her meds, as well, through the tube. If I ever needed a reason to feel better about the long-ago decision on the tube (I didn't) ... this was it.

So many things fell into place yesterday, and it was so clear to me that God's hand was on Mallorie. I cannot express the comfort I felt at being able to place her into Dr. B's arms (the anesthesiologist we had requested). She was the anesthesiologist for Mallorie's surgery in February, and knew her, and the history. She looked at me after accepting her, and said, "I have a very important responsibility." Probably no one knew as well as she did, how difficult that moment was, and I knew she took it seriously.

Her surgeon and residents did their typically excellent work and were patient with all the, "Oh, by the way" calls the nurses had to give them. Sometime I guess I should have written all that stuff down for them!

Mallorie had, as usual, excellent nursing care, and we had a chance to catch up with nurses from previous hospitalizations, including sweet Conchita, who has in the past done everything from working on quick scalp IV's to picking me up breakfast on her way in to work.

Sorry it has taken me this long to post, but I fell asleep on the way home, and then went right to bed and crashed for a few hrs! Not enough sleep the past few nights.

Thank you all for praying for her and for us this time. Carley was able to read me the comments, and I got your texts and am just getting to the emails. It was such a comfort to know you were all there.

And thank you to Cathy for updating for us while we were gone!

Thursday, September 25, 2008

Update as of 8:02p.m.

As of 8:02 p.m. Mallorie is doing well. It is such an answered prayer as they needed this to go smoothly. This was not an easy decision to have the surgery due to all the complications in her last surgery. Connie says "she is doing well & God willing will go home in the morning. That is so Awesome! I know they would appreciate your continued prayers for precious Mallorie Rose!

Update on Mallorie...

This is Cathy, Annabel's mom, making a post for Connie. Please continue to keep sweet Mallorie in your prayers. She did have her surgery this morning. I recieved a text from Connie saying that Mallorie was in recovery and that she would be moved to PICU. Please, please pray that Mallorie's recovery is uneventful and all goes according to His plan.

Sunday, September 21, 2008

On our way

We are on our way to Houston in a few minutes.

(THANK YOU to "Aunt Cathy" for allowing us to stay in her home all week! We miss you guys already!)

John called around and was able to find a hotel near the hospital with a room for us to use while we are out there. With all the people displaced from the recent storm, we weren't sure how easy that task was going to be.

We have the pre-op visit and pre-registration stuff (takes all day, most times) to do today, and we will have to be at the hospital early tomorrow, so we have always stayed overnight before surgery ... to avoid having to leave home at the ungodly hour of 3 a.m. or so.

Thursday, September 18, 2008

Upcoming Surgery

We’re in Arlington, near Dallas, because we lost power after Hurricane Ike last week. It’s given us a much-needed chance to visit with Cathy, the godmother of all our children, and her twin girls, Sophia and Olivia.

Mallorie is scheduled for her “definitive lip repair.” We are pretty certain it’s her last cleft surgery, and it’s supposed to be the most minor of all of them. We were even told that many children have the surgery done on as a same-day procedure. It’s the surgery she was supposed to have in February, but the plans changed once the plastic surgeon saw how the front of her palate had come apart, and he ended up re-doing the first surgery, and adding the closure of the entire palate. But in February, most of you know that she ended up being hospitalized, unexpectedly, for almost a month, so it’s not been easy to plan for this surgery. We know, from experience, that things can go wrong.

The pre-op visit and registration work-up will take place on Wednesday, and Mallorie is scheduled as the surgeon’s first surgery, at 7:30 a.m. on THURSDAY (Sept. 25). As much as ever, we crave your prayer support.

A really nice surprise this time is that the amazing Z. (Cleft Lip and Palate Coordinator) told me we could make a “parent request” for an anesthesiologist. If you ever heard me talk last time about her anesthesiologist, you know she’s the one we want again, so I called right away and requested the sweetest anesthesiologist I’ve ever met, Dr. B. She knows Mallorie’s history from February, and from the moment I first met her, I felt Mallorie would be safe in her hands. She also came to check on Mal almost daily while she was in the hospital. Just knowing that she could be part of the team on Thursday is a bonus I hadn’t even thought of hoping for. So I’ve made the request, and we’ll see if it works out.

The specific things we’d love prayer about are:
  • IV site. Except for her umbilical line (in her belly-button) in the early days after birth, and the central IV line and arterial line while she was in the PICU in February, the nurses and doctors have only been able to place IV’s in her scalp. Last time, we told everyone to feel free to shave her head, as needed, because we expect that’s where they’ll end up with the IV, but since God knows where he placed those veins, it will be interesting to see what they find this time. I am always in awe of those who find any IV site on her.
  • Successful surgery with no problems during or afterward – particularly no respiratory problems.
  • Can we ask for no pain? J Post-surgical pain management is typically a problem for her, and her habit for dealing with surgical pain is thrashing her head back and forth … typically hitting her lip. After surgery to her lip, this wouldn’t be a good thing.
  • Quick recovery and no additional problems with gagging/vomiting. After the past hospitalization, she had both of those for a LONG time. I’ve come to think some of it was related to how long she had a tube in her throat … supposedly, it affects the gag reflex. We’ve recently seen such improvement in that area, so please pray about that.

It comforted John and me last time to know that others were praying, and we could just rest, knowing our family’s needs were being brought before God continually. Thank you all for this gift!

Our very first post...

This is Carley, Mallorie's big sister. We just set up a blog for her, but we aren't going to really get going yet. Soon!