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!

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.

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. :)

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.

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.

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.