On the Launch Pad

That's a quote from Dr. B. I think she also said something about Mallorie being on autopilot. Did I mention Dr. B used to be in the Air Force?

She came in this morning to see Mallorie, and said her chest x-ray from yesterday was clear and we're waiting to see what her caffeine level was. It had gotten low ("3," I think?) and so we were having really frequent episodes of apnea a couple of nights ago. They gave her an extra "bump" of caffeine IV, and then Mal decided she really loves the night life! :) Gotta love a girl who needs her fix. (Her current dose is 220 mg twice daily. Isn't that a cup of coffee, at least??)

I have some really cute pictures to share, but no way to download them till we get home. I did manage to get these ones with my trusty old cell phone. Surprise, surprise.

From when she took out her own tube, silly girl.


Enjoying a light show from toy Becca (speech therapist) gave her. If you look at her forehead, you can see Ida's scalp IV is still there in this picture. Just makes me smile to see it there! You'd have to know how strongly Ida refuses to ever try scalp IV's! :0 Oh, and there's evidence of the haircut mommy gave her, too! No one is happy about that, least of all, Hannah. And Ida kept talking about Sampson, and losing his strength. But I wanted to be sure no one (IDA) was afraid to try a scalp IV. Hair always grows back. Even for Sampson.


Adorable bunny complete with g-button, sent to Mal from Laurie in CA, just in time for having it at the hospital and making everyone else jealous!

Just hanging out...

I am just making this post, didn't ask Connie, she is working today and don't want to bother her. I do know she is still in the hospital being treated for antibiotics.
The very first time Mallorie was in the hosp. (I think early Dec.) she had pneumonia and I think the dr. this morning said he want to make sure that it is gone this time. So if I understood correctly he wants 7 days of antibiotics. I think she is doing good according to Connie. I haven't been back to the hospital due to the fact that I don't want to bring unwanted germs there or here! Thank you for checking in on sweet Mallorie.

Birthday Wishes...

This is Cathy (Annabel's mom) posting for Connie. They are still in the hospital receiving more antibiotics and Connie continues not to have access to the internet. Mallorie and the entire family want to wish Dr. B the best birthday ever and to thank her for all the care and friendship she offers them! HAPPY BIRTHDAY!

Monday's update..

Connie texted me this morning after the doctor left. They will stay another day on antibiotics to be sure she does well. Her breathing is good with good oxygen levels. I was so lucky to go see Mallorie yesterday and she is so precious. Please continue praying for her that she will clear up and go home for a very long home stay!

Update....

As of this morning Mallorie is still in the PICU. She had a rough night as far as rest goes, doesn't like the tube in. Connie is hoping the tube will come out today and that she will rest much better. Thank you for all the prayers and we know that is why Mallorie continues to improve!

Praying and Praising....

This is Cathy, Annabel's mom. I am making a post for Connie. I want to begin by praising God that Mallorie is with us tonight!!! Earlier today Connie said she choked and needed to be bagged. Connie did this but had to call 911. She was intubated and rushed to the hospital. They called Texas Children's Hospital because our local hospital doesn't keep babies on vents but there were no beds. After some improvement and a visit from Dr. B it was decided to keep Mallorie on CPAP and she would remain here at our local hospital in PICU. She is doing good tonight but I know that her family would appreciate prayers being offered up on her behalf. This is Mallorie's 3rd hospital stay in a very short period of time. Also, Connie wanted to offer up some kuddos to her precious nurse Ida for getting a scalp IV! HOORAY to IDA! I am sure Connie will make an update as soon as possible or will allow me to make another post. I may have gotten some of the details mixed up, but in Connie's words they thought they had lost her earlier today! Prayers, please!!!

Late Update

Sorry, we've just been so busy, and haven't updated. Mallorie has been recovering really well from her RSV adventure. Except that she still "oinks" (her dad's term) every few days for a little while, you'd almost not know she was sick. The oinking is the funny noise she makes when her nasal passages get swollen and she still insists on breathing through them instead of her mouth.

She also has been taking a solid feeding in her tube once a day, meaning a mixture of Gerber turkey-rice-veggies, fruit, baby cereal, some Udo's oil, and milk. Oh, and egg yolk, which apparently doesn't cause the violent retching/vomiting that whole egg did in the past. Matthew has been mixing up her mixtures every day, and spends time creating plans and calculating calories she'll be getting each day, using this book.

I also recently found a support group (a yahoo group) where I've learned so much mostly by quietly reading the emails among members, and even been able to connect with a couple parents who have given me encouragement and advice. One of the things that I found most comforting was reading emails where other parents talked about how hard it is to just make the change, to start adding solids to their children's diets. It was wonderful just to know I wasn't alone in having trouble with the transition. Some days, anything extra - like making a change in routine - just feels like too much.

And I also learned from this group that the Mic-Key button instruction pamphlet actually mentions giving blenderized foods through the button! (I checked to make sure, and sure enough, it was there.) So much for the warnings we were given to never, ever put real foods through the tube. I'm pretty sure I read something about blenderized food in the Mini-One paperwork, too. The professionals will catch up with what families are apparently already doing, some day. (I still chuckle when I put Mic-Key and Mini-One in the same paragraph.)

Mallorie's speech therapist, has also been working overtime, helping us create/adapt toys that encourage Mal to use her arms and get her reaching and involved in active play, as opposed to just passively watching things go on around her. I want to get Becca's permission before showing pictures of the latest thing she made (which is another way of stalling, because I need to get to bed, not try to figure out how to download pictures from the camera, tonight).

Oh, and I have to post soon about the neat chair a mom I know told me about. Later.

Going Home Soon

Mallorie's breathing is great, her cool g-button is in, her last breathing treatment for the road, done.

The pedi covering the hospitals was kind enough to come by this evening to check on Mallorie so he could give her the OK to go home. We're almost out the door. Just a few more things to do and we can all sleep in our own beds/cribs tonight. We're a happy crew.

We've had wonderful, caring treatment here. ER, pediatric unit, nurses, doctors, respiratory therapists, radiology staff, housekeeping staff. I am not exaggerating a bit to say that it felt like a home away from home. One respiratory therapist even finished a treatment a couple of nights ago, and then asked if he could pray for Mallorie. We are very, very grateful for the care and for the kindnesses.

Done, and With a Good Dose of Happy Hour

The cool button is in, again. If you couldn't read between the lines of the last post, this "procedure" kind of stuff stresses me out. Well, for no reason at all, if there's Versed involved.

Mallorie acted like she thought she was swinging from the crib rails, and the button's in, and later on I'll update this post with a picture of Mallorie and her very photogenic hero, Dr. H.

Thank you to nurse Sharon, whose attention to all details of safety involved in conscious sedation, and to every other detail helped me stop wavering about the decision. I know, unbelievably, since I caanot stop singing the praises of this alternative to the hated MicKey.

And it just hit me last night, perusing the Mini One's website, that one button is a MicKey and the other is a Mini. That cannot be a coincidence, but you just gotta be a little quicker on the draw than I typically am, to catch that joke.

What Happened to the Button, You Ask? (Hospital Day 3)

I should really be telling this story on a Monday, so I can deny some of it, but maybe a little bit more than a week after the Mini One button was put in by Dr. H, I was sitting near Mallorie on the bed, and turned to her to pick her up, but accidentally kneeled onto the tubing (which was still attached to the button), and the button was pulled out of her tummy as I lifted her. I knew as soon as I heard the "pop" sound, what it was, because her Mickey button has been pulled out with the balloon attached at least 3 or 4 other times. Talk about a way to make you feel human. Forgetting to detach the dangling tubing before picking her up so this kind of thing can happen is so not a Mother Of The Year move (to borrow a phrase from Addison's mommy).

The only difference in this situation is that Mickey button balloons can be deflated, and put right back in. The Mini One is a little more complicated, and even though I tried ... on two different occasions ... to replace the button, I couldn't. I panicked and worried I was hurting her. Not that I had been told, by the way, that I was expected to replace the button, but John kept telling me that Dr. H told him to keep all the little gadgets that came with the button, in case it needed to be reinserted. So I thought that meant I needed to do it.

Mickey buttons aren't at all difficult to put in, and THANK GOD we had a replacement Mickey, so we were able to put that button in to buy us some time till Dr. H could replace the Mini One. That meant I could give her something for pain, because it hurts to have a tube or button yanked out of your belly through a tiny opening. By your mother.

But I've said before: I hate Mickey buttons. Almost immediately, Mal's skin around the button got irritated, and it wasn't long before I knew that we needed to schedule the replacement. So we know why God made pedisurgeons. Dr. H offered right away to work something in at our convenience, but we just didn't get to it yet. OK, it's actually because I keep procrastinating, because I want her tummy to be no longer sore before messing with it again .... even though I realize that any soreness at this point is because of the Mickey!

When Mallorie was admitted a couple of days ago, the other Dr. H, the pediatrician, talked it out with me and helped me realize that I SO much believe the other button is better for her, and so I need to just let it be done. Dr. H has even said he'd give Mal a bit of Versed before he does the button tomorrow, to keep her from being too anxious during the whole thing. I like that idea. I really don't want her having any memory of anything that she might associate with feeding or her tummy, to be flavored with anxiety. I know, we're talking about a baby, here. But still.

And I keep wondering if maybe Dr. H meant to say he'd give Mommy some Versed. Or Valium? Something with a V would be nice.

Oh, and her IV is out. See, I knew this should have waited and been done as a Not Me Monday post! She's getting all her meds through her g-button, now, and that tends me make me more sure we will be going home tomorrow. With the cool new g-button back in place. :)