Sunday Blessings

Mallorie remained relaxed all night, and her nurse was successful in advocating for "another hour" to allow the new blood pressure medication patch to stay on. For Jennifer (her nurse), this meant extra work, rechecking, rechecking ... I tried several times, both legs and the arm without the IV, and eventually gave up and went out to sleep. I fully expected this morning to find her patch gone, but I peeked under the covers on her back, and it was still there!

I know it's not just the patch, because God allowed Mallorie a blissful day of rest yesterday. The morning did NOT start out that way, and there was talk of reinserting the tube in her throat, and her milk feeding was stopped for that purpose (so she had less risk of aspirating on whatever was in her tummy if they had to put the tube in). But I was able to send out SEVERAL texts, asking for prayer, and very quickly things just turned around. Kate, her nurse yesterday, who took care of Mallorie several times when we were here 2 years ago, suggested I get in the bed with her (she's still in her big girl bed) and very, very quickly she fell asleep. Hannah spent a long time in bed holding Mallorie, and then we just put her in the bed alone, to see if she would remain calm, and she did, nearly all day. And through the night.

And today.

John bought her a white noise & music player from Bed Bath and Beyond, and I just turned it off, because maybe daytime is for waking up?? :) But we'll allow her to do whatever she needs, because she sure had an extended period of being wide awake and unable to relax. Days.

She will have another MRI of her brain tomorrow sometime, because there was something abnormal seen last week, that they couldn't quite make sense of. Then, at some point after she recovers from the anesthesia they give her (and possibly having a tube in again for the procedure), they plan to transfer her to another floor with a slightly lower level of monitoring. And a private room, I believe. (We've had 3 in a 2-bed room for the past few days, now.) Because Mallorie is normally monitored at home for apnea with a pulse oximeter, and because she's been so unpredictable this stay, it won't be just a "regular" floor, so that's a good thing.

Tomorrow is the day the residents in the hospital move to another area of training, according to the resident who has had Mallorie her entire time here, so she may be watched another day in the PICU after the MRI, just to be sure she remains stable. But I see us moving soon, and that will mean no wondering if there will be an available and not-broken recliner each night, no trying to sleep on the floor when there isn't, like last night (only to be woken after a little time to tell me there is no floor-sleeping allowed). I am looking forward to the PCU! Plus, Conchita is there, a sweet nurse who cared for Mallorie in a couple of her past hospitalizations, and who we learned actually lives in the same town that we do. It will be like going home. Almost.

And now, since Mallorie still feels like snoozing, I'm going out to get myself some cocoa. And maybe some sunshine and fresh air.

Saturday - Long Day of Ups and Downs

I can't even think through this day enough to describe it here, and certainly am not interested in reliving it.

But at least once today (morning) there were people talking about putting the tube back in .. and her nurse stopped her feedings "in case."

There were multiple discussions about her nostrils. Dr. B - sure you can't be convinced to come down here and talk sense to them? I've brought it up a number of times, that ever since Mallorie had her final cleft surgery which closed her nostril, she's been fine ... unless she gets some respiratory illness. Which happens in the winter. Then she looks VERY dramatic, because she never had to learn to breathe though her mouth, like other kids. She continues to breathe through her nose, and if there's any congestion, she just works harder and harder ... causing more swelling inside as she's forcing air through the nostrils faster and with more force. Some doctors get a glazed look and I can tell it's not the right time. But I did want to have a steroid nasal spray set up before she ever got the tube out the second time, because I knew Mallorie planned on breathing through her nose, and I knew it would be better if we planned for it better this time. One attending last weekend said it was a fine idea, and said they would start a steroid spray a few days early, and maybe some Afrin spray could be available, too. And then the tube came out and nothing like that had been done. And no one acted like it was important. Last night, I decided to write it down as a note and left it with the nusre to pass on, and still nothing. And when I relieved Hannah tonight when they asked her to go get me at change of shift because she was working at breathing again, and they'd suctioned, and given an epinephrine breathing treatment, I just put my arm around her, calmed her down ... and said again, she needs something like Afrin. The night nurse laughed, and said she'd just said the same thing. But when she asked the night doctor, she came back and said the doctor was worried about Mal getting addicted to the spray.

Am I the only one here who thinks this is crazy? I'm not asking to put her on a street drug. And in my head, I'm thinking only a few days till the steroid spray kicks in, but even if they didn't think I would agree to it, certainly they could simply write it for 3 days only. I mean, who has all the control here?

It's been a day of struggling pretty much all day with ways to communicate, so people will understand what I see or know about Mallorie. Things they can't know because they don't live with her. Or patterns they can't see from simply stopping in the room for 5 minutes a couple of times a day. Things I can tell them, if they want to listen. Sometimes I just feel like giving up with the effort of restating and restating and disagreeing and asking again. Or tired of finally getting to someone who can understand, but then they go off shift and nothing was passed on. Or the next group simply thinks it's stupid. But obviously, giving up isn't an option. Neither is losing my mind and calling Dr. B at 3:30 am, this time. Plus, the Crazy Ranting Mommy idea didn't work so well 2 years ago, so I don't expect it would have great success this time, either.

So I continue trying. And hope.

And once in awhile a sweet, sleep-deprived fellow (doctor training to be an attending) will stay as long as it takes to really listen, and will hammer out a compromise that shows that her ego isn't as important to her as the whole picture.

Or a neurology resident will listen to a scattered history of what I see going on with Mallorie, and will come up with a compromise that she and I and her neurology team can live with. One that they don't feel will harm Mallorie, that will not cloud the picture if she should get another EEG sometime, and that will allow us to move past this crazy agitated posturing thing that Mal is doing, that ends up with her struggling to breathe. Before putting a tube in, as a matter of fact.

Or another fellow who's been doing an awful long stretch of nights with Mallorie, and worries about the risk of a nose spray to my potentially Afrin-addicted baby, but is able to give a little, anyway.

I've learned that when I'm frightened or sleep-deprived, there's a defensiveness that wants to voice itself in statements like, "Just because she's got disabilities, doesn't mean she isn't very important." I bite my tongue and think about where all this is coming from. Why do I leap to that place so quickly? The communication struggle is not about anyone here plotting against her. They don't treat her differently from "typical" children because of her differences. I really don't believe that in my heart, but that craziness gets stirred up in me at points. And this is what I am learning: it's me, not them. A lot of the communication struggle is a system-thing, and I'm not sure there is a way to get around that there are several people to "convince" if you have a request, and that those people rotate in and out with several other people, and on and on.

But the leap into defensiveness and becoming one of the "Scary Mommies" is something all within me, and something I need to keep a tiny bit in check. I mean, if I don't want to alienate everyone and then REALLY find out what communication problems feel like.

I also have had to speak up sometimes and tell people not to say things that "might" happen as if they really are happening right now. Things they sometimes seem to be pulling right out of their butts out of thin air. Like, "Did you ever think she might be having TIA's?" TIA's are also called "mini-strokes" ... ummm, no. I don't think she is having those, and even if that is a remote possibility, I don't think you need to be talking in this room about things like that in her hearing. (Or mine.) We do much better staying with the here and now, and I can assure you that I have years of practice jumping into the wide world of terrible-things-that-possibly-could-happen ... but aren't happening right now, and may never happen. I'm actually working on changing that.

They decided to try a new med for Mal's high blood pressure, and I was really excited about it, because it has a side effect of causing relaxation. But she is now showing us too-low blood pressures, so I'm pretty sure they are going to take it away (it's a patch). Maybe they can give it to me, instead? :)

Well, it's past midnight and I really need to sleep.

Very special visitors

Christine, a family friend, and her friend Merari, came by just to visit with Mallorie today, and stayed quite awhile, ... actually until they were kicked out! Our nurse was really patient, but eventually had to remind us that the "party" was only supposed to include 2 at a time, plus Mal. :) I didn't realize until they had left, that I never got a picture of them with Mallorie!! I had the camera right there on the bed the whole time, too.

Right here is where the picture of Mal's first visitors to see her without her tube should be. I really feel badly to have missed that opportunity while they were right here "partying."

Thank you Christine and Merari. It was so nice to visit today, and have you share our watch over Mallorie's peaceful breathing. And of course, I loved hearing you tell us how cute Mallorie is! :)

Thursday - TUBE OUT.

SUCCESS!!!!

The tube came out about 10 am, and it was a little bit of an adjustment for Mallorie at first, and people (doctors) kept coming by for awhile, checking, saying things like, "It could be awhile," and "It could be a process; she might need some support for awhile like BIPAP," etc. But Mallorie flew! Initially she required some suctioning, a couple of breathing treatments, more suctioning ... but eventually, after I had a chance to sing in her ear, stroke her head, and just trusted God with her, she breathed more and more easily, and mostly has been breathing easily all day. She has only a face mask with some oxygen and cool mist on her face.

I think I was the only one who felt (after my initial moments of panic) that she would continue to do well. Sometimes I wanted to tell a doctor to step outside the room if they had only reservations to speak around her, but that's only because of the recent conversations with my friend Rhonda, who told me to counter any negative conversations around her by speaking God's word into Mallorie's ear. I did my best - I couldn't think of verses, but I did remember songs from scripture, and they absolutely calmed Mallorie.

She's still running fevers, and will continue on antibiotics for awhile, but her blood gases (tests which show how well her body is responding to coming off the vent) looked good. I had to smile when I overheard the attending saying he was going to postpone the post-extubation chest x-ray, because he didn't want to mess with her once she had gotten to such a comfortable state. I was smiling, because the nurse and I had already moved her around, changed her diaper and the soaking pad beneath her, and suddenly it struck me that I could pick her up in my arms (!), so I went ahead and snuck in a big snuggle. It did good for Mallorie AND for me! And she kept right on breathing well, and when we had diapered her, she turned herself as much to her side as she could, and relaxed some more. So I'm saying, he probably could've gotten that chest x-ray with no problem, but I didn't speak up. I had already told God I was leaving all the decisions surrounding her extubation in the hands of the people He had put there to care for her. So that meant I restrained myself as they did some "aggressive" (my mommy persepective only) deep suctioning, even when I saw blood, and out-loud talked myself through the process. Good thing Vera's mommy had already spoken on this topic, because it helped me to remember.

She is right now looking like she is working a little harder at breathing than she was before, and has been suctioned a couple of times and the cool mist was started, so please pray for a good night with easy breathing.

The girls at the top with Mallorie were the Kangaroo Crew that brought Mallorie from Beaumont to Houston 2 weeks ago. Whenever they are on, they check in on her, and today both came by for their Photo Op. Thank you Christine and Lisa. You gave me such confidence in your ability to keep her safe, so I was able to let you fly with Mallorie and John, and drive separately in peace that night. I will always be grateful.

Busy Day

Mallorie got a new PIC line.

But got such a great sleep during the procedure that she snoozed pretty much all day afterward, and her heartrate kept dipping into the 50's. As 6 pm neared, and the doctors started their rounds, I prayed that God would direct the decision about extubation, and that they'd simply have a good feeling about today vs tomorrow. The attending came in after they discussed Mallorie, laughed, because her heartrate was in the 140's and her eyes were open, but said they felt because of the timing, the best would be to give her some light sedation tonight, and even restart her feeding, and wait till tomorrow morning. That way more staff are around if she required the tube to be put back in. They will probably stop her feeding about 2 am, and could try taking out the tube as early as 8 am.

So she had a visit from her other mommy, Tracy, who promptly set to work fixing her hair, making sure her face was clean, putting on her baby legs (found by Tamara) and telling her how much she loved her. She probably sang to her while I was away showering.




Then tonight, she got a nice bath, a manicure and pedicure, and smells like baby lotion.

And keeps trying to sneakily turn herself over onto her tummy. Just like at home. :) We keep promising her if she breathes really well tomorrow and keeps her tube out, we will let her sleep on her tummy.

So may tomorrow be another good day.

Ministry and Waiting Rooms

I usually try not to ask questions like, "Why me?" I think it's because I see enough around me to ask, "Why not me?" But I also think God knows my heart and probably knows that at some level, I do wonder, sometimes. (I also think He loves me more than I even love my children, so He has compassion on me.) It does help me, some, to see a positive thing come from a period of suffering. Or from a prayer that is not answered in the way I asked.

Like before Mallorie was born, the ONE thing I consistently asked God was not to let the sac on her back (where the spine hadn't finished closing) to open. But it did burst open in delivery. My OB knows better than anyone how that one thing rocked me. Why didn't God answer just the one thing I was asking for? It was weeks later that I realized that if God had answered that prayer in the way I had asked, then Mallorie probably wouldn't have had the extended NICU stay. My plan was going home and then to Dallas, where I'd heard there was at least one neurosurgeon who would be willing to close her back, regardless of whatever genetic abnormality she might or might not have. But we were definitely not equipped to bring her home, and she really needed the time with attentive nurses to watch over her and resuscitate her if she had apnea, and needed time for them to learn how she did with caffeine. So what looked like God didn't listen to me, was really Him answering all those desires I didn't yet trust Him to pray for. Like for a living, breathing baby to bring home. I hoped for that, but don't honestly know how often I prayed specifically that way, until we got close to delivery.

So why is Mallorie hospitalized today? Unfortunately, I don't usually see good things about her hospitalizations until much later, in retrospect. I used to get Google alerts about blog posts that included trisomy 18 and 13 (back when I thought I had time to keep up with such things). And I had found Witt's blog. Today, I spoke with his grandmother, and was able to tell them of a program the family needs for Witt. So maybe one reason Mallorie is here was for Witt. And why is Witt here? As I left the PICU waiting room, I saw his grandma speaking words of hope to a young dad who had been sobbing to someone on his cell while she and I had been talking. I wasn't near to hear what she said, but the effect was clear on the dad's face and in his posture. I usually feel at a loss for the right words, and feel I often end up saying useless or just plain wrong things. But God gave Witt's grandma the right words this time.

Ever since reading this post on the Bring the Rain blog, which is always an encouragement to me, I have wondered about opportunities that might be around me for ministry. Please don't think I am really good about responding to God's leadings - in my own self-centered thinking, I probably miss several opportunities. Or try to do it on my own, and as I've said ... my words aren't much use to anyone (even to me!). But today God allowed me to get a small glimpse of the way He can use any of us, in any situation where we are found. Not that Witt is here only for that young dad, or that Mallorie is here only for Witt's family. But while we are here, we can be salt and light.

And today, I think Mallorie started looking in my direction when I was talking to her. :) Good thing, too, because they are getting ready for extubating her tomorrow. Please pray.

You are the salt of the earth; but if the salt has lost its taste, how shall its saltiness be restored? ... You are the light of the world. A city set on a hill cannot be hid... Let your light so shine before men, that they may see your good works and give glory to your Father who is in heaven. Matthew 5:13-16

MRI and PIC line

The PIC line has been postponed until tomorrow morning.

The MRI of Mallorie's brain was done yesterday, and the neurology team isn't sure what to make of the report. There is some change from the MRI she had done in the NICU - 3 years ago, to the exact day - on the right side of her brain, only. But they don't know what the change could be from. Infection doesn't seem the most likely, as she's had testing on her shunt and fluid taken from the shunt twice already, and nothing looked like infection. Or blockage. So they don't know. I think he said that if anything, the ventricle(s) looked smaller, which would not be expected with some sort of infection or inflammation going on. And if this is all just words to you, join the club. Repeating the stuff I hear doesn't mean it's all registering as English to me.

So the radiologist's recommendation was to repeat the MRI in a week or so, and the neurologist who came in this morning said they will discuss that as a team. It could be influencing Mallorie having seizures and having trouble with the tube coming out.

But there is the question of the caffeine level, too. There was a time in the past few days when Mallorie was breathing too fast, and this altered the blood tests that monitored her respiratory situation. One doctor's theory was a too high caffeine level, and yesterday's verbal report that the nurse got from the outside lab was that it was too high. Which would possibly make sense of that part of the picture.

But today, no one can find that level (report) in the lab to fax here. My theory is that a lab result that doesn't show up for over a week can be a lost specimen. But the caffeine discussion brought up a point for the future. We know, from having her levels get really low last year, that she still needs caffeine to manage her apnea. It works, and when the level is too low, she will have apnea (just stop breathing from time to time), and if the level is really low ... like a "2" as it was last year, . But they said that there is hope she will eventually outgrow the apnea. That a wean should be attempted at some point. I was alarmed, because I thought this was expected to be done now, but the fellow I was talking with said it was something that might happen over 2-3 years. And that Dr. B could do that. Oh, OK. So that I can live with, because one of the things I know for a fact about Dr. B, is she is not about to compromise a child just to test a point. She would be the one I'd most want to manage something so important, and I'd trust her instincts as well as know that she'd listen to John's and my feedback about apnea. Whew. Here, the plan is to just cut back the doses a certain percent, and presumably, they'd retest the level.

And maybe they could draw a new level before cutting back, in light of the specimen/results that they can't locate in that far-away lab. :) Just kidding. I promise you, they aren't all asking me for my input.

I can't wait till John is able to come out tomorrow. It is so much better being here with someone, and who better than my beloved, who adores this little girl as much as I do, and who gives her blessings whenever he can. You should have seen me trying to remember the blessing he gives all the kids, to say it over Mallorie before her MRI yesterday. I think it came out, May the Lord bless you and keep you; may He bless you and keep you, may He bless you and keep you, and give you his peace. Last night I had to sing the Michael Card version to her in order to get any of it straight. Better hurry up and get here, daddy.

Monday

First, let me say I am grateful. Grateful that there is such a high level hospital for kids so close to home, so John can come out without driving all day, and friends actually have times when they might find themselves in the area. I am glad that the input of many doctors can mean one person might add something to the puzzle that another person might not have thought of, ever. I am grateful for a huge waiting room with recliners. All of a sudden, I'm grateful for a coffee maker in that waiting room. I'm grateful for the nightly blanket and pillow, and the shower room on the 7th floor that is set aside just for the purpose of people like PICU family using it. Grateful for the many moments when someone stops by just to ask how Mallorie is, to bring me something, to promise to pray.

But I also am grateful for Dr. B and the other doctors in her practice, and hospitals at home. I'm just thinking about that today. Really nothing specific. Or if it was, then I've forgotten it in the time it took me to write the short list of why I am grateful for where we are right now. I know I could easily think of more. But there is something I am missing about home, and I desperately hope our next hospitalization (may it not be needed for a long, long time) can just happen at "home."

Oh, yeah. I remember - the reason that made me think of hospitals at home is that a caffeine level was drawn over a week ago. I think on Friday, and was a "send-out." Meaning it's a test they don't do in-house, and have to send to an outside lab to complete. It's still not completed, and still sends "in process." Which, best that i can remember from working in a hospital, is not a guarantee that anyone in the receiving lab has even acknowledged receiving it. I ask from time to time, what about that caffeine level? The answer is always that it's a send-out. Once, someone told me they have to send it to Houston. All the way to Houston? Oh, yeah; we're in Houston. Then I learned it goes to Utah. One nurse called a few times, and never got through to anyone, but was able to leave a voice mail, but no one called her back.

At home, we have results in a couple of hours. We'd have to be pretty darned late going to the lab to get the blood drawn, to miss a chance to get same-day feedback. So, that makes me wonder. Why can't they send it to somewhere closer than Utah? Like, um, our town?

Mallorie had her MRI today. The attending doctor came by and said they need neurology to look at the results, because there are some changes when compared to the MRI she had done 3 years ago (to the day). On one side of the brain, and he says it doesn't look like she had a stroke, which was the thought, I know, going into the test. They say there wasn't anything seen in the fluid they took (twice) from her shunt that looked like infection, but now they wonder about some other viruses. I think he called them rare viruses, or unusual viruses. Mostly what I heard was no stroke. Because I was already wondering how much hyperbaric oxygen treatments cost.

When the respiratory therapist and nurse were retaping Mallorie's tube in her throat today, it slipped, and Mallorie gagged. They checked the tube position, and verified it was where it needed to be, and went on with the task of taping. It took me a couple of minutes, and then I realized. SHE GAGGED. She gagged. I checked with the nurse and respiratory therapist, and we all agreed. She gagged today, and gagging is good.

The nurse finally got through to the lab in Utah, and says the caffeine level was a little too high. I have trouble believing it, actually. Not unless it was compounded incorrectly, which I highly doubt. She's never high; we go in for checks, and she's low, if anything. So what this means, I don't have a clue. I sure hope at least one thing it means is that they re-check at some point.

Sunday

Still breathing through a tube in her throat, on a vent. Not needing the vent to do the breaths - she is doing her own breathing - but still getting oxygen and still has the tube, because Mallorie is not back to herself. She is not aware of me, not responding as if we are messing with her, and doesn't seem to have a gag reflex yet. Tomorrow she will get an MRI to check her brain.

I didn't get to sleep till after 1 am last night, so I started out tired and low, and learned when I came back to her room that her IV that I loved so much (in her arm) was out, and they had stopped her milk because her belly was distended. There was a new IV in her scalp, courtesy of Tony who, like Ida, isn't a believer in cutting hair. Crazy guy. But because of this, the plan is still on to have her get that PIC line (an IV that starts somewhere like an arm or leg, but the end is closer to the heart) on Tuesday, after all. I had been hoping that we'd get closer to Tuesday and they would be happy with the arm IV and decide she didn't need the other IV.

Rounds had already been done, and I actually, I hoped (and prayed) that the attending doctor I liked so much yesterday, would not come around, after all. Because I didn't want to hear any negative thoughts. She had said something in rounds yesterday about wanting Mallorie to be at her best when the tube comes out, to give her her best shot of being successful coming off the vent. And mumbled something about, "because then we'd have to have a conversation that mom and I don't want to have." Whatever that meant. So I was wanting to avoid any conversations, in case one might be the one "we" don't to have. Around 5 pm, she did come by, even though it almost sounds like she wasn't Mallorie's attending today? She is very nice, and told me to give Mallorie more time to come around, that she might just be sick still. I liked the sound of those words. So we will wait.

The doctor who I think was Mallorie's attending today came by and introduced herself, and we talked about Mallorie. Who she is, who I think she is (because apparently, word around here is that I don't realize she has any "issues"), what I think she has that caused her issues, etc. I don't remember exactly what I said, but I felt as I was talking that I had a chance to speak for her, to let someone know that I believe Mallorie's unique body is not the result of some mistake. At that statement, the doctor said, "Well, something went wrong." I elaborated that still I believe she was made exactly as she was meant to be, and was an intentional creation. When I finished, she said she understood, and that we were on the same page (about Mallorie's value in our lives, and how there are people with disabilities who are simply meant to be here, and are not mistakes). And that she was very glad to have had the chance to meet me, herself. You know, because of all the impression they apparently have about me thinking Mallorie's a "normal child."

I wonder if that is in her NICU stuff, or just the day to day report handed over between doctor groups, about me being the crazy mom in denial? Because I do remember being told the transport team printed out her entire record and read it on the way to come get her.

Well, I called my friend Katha, to get some encouragement, and hear some words about God. And took a shower, and now I'm going to give Mallorie a bath and get some sleep. Cynthia, a respiratory therapist, came by because she doesn't have Mallorie tonight, but wanted to check on her. She listened to my report of the day, said, "All in good time," and told me she would pray for her. Those are the kinds of words I needed to hear today. And I'm going to bow out of the late night dinner parties that happen in the waiting room, stick some ear plugs in my ears, and try to sleep enough to make up tonight.

Why I am here.

I had a phone conversation with a tearful Hannah today. Hannah is 15, and is our family caretaker, nurturer, and worrier. It was Hannah who was with Mallorie when she had whatever happen that required them to take her to the hospital. Hannah just wants her baby sister home, back to her old normal self. She wants to kiss her and hold her, and love her in person. Instead, she is dependent on pictures I put on the blog, and updates.

She was asking me if Mallorie might be brain-dead (for which I was grateful for the EEGs, because I could tell her that her EEGs show areas responsible for seizures, and definitely brain activity), and I was realizing how I can never predict which of the words I use with this precious daughter, will frighten her. And I can't hold her right now, look her in the eyes; all I can do is listen to her on the phone and tell her what I do know. And that even though there is much that I do not know, and neither do the doctors know, ... there are some things I am certain about. One of those is that God has not turned His face away from Mallorie. And that even though WE wear down, "He neither slumbers nor sleeps." And that the powerful love we have for our beautiful sister and daughter, doesn't come anywhere near to the love of her Creator and true Father.

When God gave Mallorie to John and to me, He also gave her to our other children. When things like this hospitalization happen, I want to trust that He will care for them, but as a mom, I worry, especially when a few days go by and I realize I've just brushed my teeth and crashed on a recliner in the waiting room and not even called to speak with them. Am I failing them, and will they suffer as a result of my failings during times like this?

That is why it is such an encouragement to me to see that God is working in their lives during these times, and teaching them HIMSELF, and helping them grow. It was Hannah I had just been talking with a couple of months ago, when I said, "Can you imagine how different it would have been if we had known back when I was pregnant with Mallorie, and when she was in the NICU, that we would bring her home, alive, smiling? I would have been so different. I wouldn't have been so terrified."

Hannah replied, But then we wouldn't have grown. We would have said, "Yeah, right."

This is a text I got from Hannah sometime after our conversation today:

Mommy! I have to read the book of Matthew for Quine [her homeschool World View curriculum] ... It is amazing! I had no idea that all this was in the Bible! If you get a chance, you should read it; everything applies to our family. It's crazy!

Later, when I spoke with her over the phone, she said things like these:
I know that's why the Bible is there, because it applies to everything.

Oh my gosh, it applies to everything we have going on right now. Even though it was written like a billion years ago. Not really, but almost.

Here is what I'm thinking. God does hear our prayers and always answers us. But that God doesn't follow our formulas, so he is unpredictable (to us). Definitely predictably reliable, predictably loving, predictably powerful, unchanging. But he is beyond our understanding, too. That sometimes answering our prayers with a "no" is blessing us. And that sometimes, all we can do is trust, because we can't even see the blessing.

But today God blessed me by allowing me a glimpse of some of the blessing. Hannah said something about all the things she was reading in Matthew, and said "I just knew I was going to hell, because it lists so many things ... like not being loving to your sister, so I had to apologize to Carley." So I checked to make sure she had a good grasp on salvation, that it's NOT what we do or don't do; that she has been saved as a gift from God, and it will never have been because of any good works she does. And her sin won't have to cause her to forfeit salvation. But after the quick check, I just grinned, listening to her excitement about what she is reading, and how she sees it applying to her life and our lives.

Today I am so grateful to the Holy Spirit for bringing words of God to life, and allowing me, too, to see how they apply to our lives. I love the story of the father who asked Jesus to heal his son who had epilepsy and kept falling into the fire and the water. Hannah found the same story, and told me she was stunned when she actually read the word "seizure" in the Bible. I am also grateful to great friends for emailing, speaking, and texting me verses that come to mind, because the words from the Bible are so powerful to me these days. I know they are true, and they are also powerful enough to change my thought processes, to give me hope, to remind me of God's power and reputation for healing, whenever I start to forget. If any of you have a verse that comes to mind when you are thinking of Mallorie or praying, or you hear scripture somewhere that makes you think of her, PLEASE give it to me. You might think that what you share might not apply, but Isaiah 55:10-11 says: As the rain and the snow come down from heaven, and do not return to it without watering the earth and making it bud and flourish, so that it yields seed for the sower and bread for the eater, so is my word that goes out from my mouth: It will not return to me empty, but will accomplish what I desire and achieve the purpose for which I sent it.

Today, just a moment before I had to go to the hospital entrance to get a "milk delivery" being brought by Tamara, a girl from the milk bank came up to the room to ask if there was any more milk, because they had defrosted the last they had for Mallorie. Tamara had brought an ice chest with her early this morning (about 5 am) when she drove out to Houston for a heart walk, and arrived at the hospital just in time. Tamara and friends did the heart walk today in honor of her son, Conner, who will have heart surgery very soon (early March). He needs his closing VSD to be re-opened and to have another procedure done to limit the blood flow to part of his body (and I can never get the details straight). I am mentioning it so others can pray for Conner and his family, because it is definitely time for this surgery, but it was postponed because he has RSV right now. The link to Conner's blog is on the left side of this page, where I thought it always had been - I have no idea where it went or when it was lost.

I will try to add pictures tomorrow, after I figure out what I did with the cable I need for downloading camera pictures.

I almost forgot the updates:

Mallorie is still having something that looks "different," and is probably some sort of seizure-like activity. It involves some eyebrow twitching with an increase heart rate, and some tensing of her muscles and noisy breathing. It's not as dramatic as the other stuff that was going on, but it's still something new.

A new attending doctor came to cover Mallorie today, one I've heard great things about in the past, Dr. McP. Can I remember exactly where I've heard of her? Nope. But I definitely know of her reputation, and loved her instantly. I am thinking that sometimes it's a good thing to have an assortment of people looking at Mallorie and having input into her care, although it's an adjustment for me, as I'm more used to our awesome pediatrician, Dr. B, or one of her colleagues, who know Mallorie well, caring for her. Today, Dr. McP checked Mallorie's gag reflex (not there), and asked if she is acting like herself (she definitely is not), and decided to slow down the plan for removing the tube and vent, to allow for Mallorie to have the best chance of being successful at breathing on her own. Since she is still having some sort of seizure-like activity, they will probably discuss with neurology team about working on her meds a little.

Neurosurgeon (same one who checked her 2 years ago, and checked her shunt her first night out here) was called to re-check her shunt to make sure it still looked like a shunt problem wasn't involved. He "tapped" her shunt (took fluid out) and checked the flow, and says everything to do with her shunt still looks good. If anything, the head CT might be actually a bit better (smaller ventricles).

The EEG done yesterday - I think, but my days are a blur - shows a few areas where seizures are probably originating from. Whatever that means.

Mallorie's nighttime dose of seizure medication seems to have kicked in, and she seems much more comfortable right now. She does have an extra med that can be given if she needs it.

Mallorie's IV put in with ultrasound in the ER in Beaumont is still doing great! And Tony, the IV guy out here, shone a bright red light on her scalp today while Dr. McF was in the room, and we all ooohed and ahhhed over the scalp veins that showed themselves. You all know I am happy to cut Mallorie's hair off for a good scalp IV, so that little show made me happy today. There is still talk of putting in a PIC line, but I hope that it doesn't even have to happen.

I think that's it. I'm exhausted, and once again stayed up too late.

Ash Wednesday

From yesterday (BIPAP)


From Monday (BIPAP)



Mallorie turned one year old on Ash Wednesday, two years ago. And then had a routine cleft palate surgery, and had complications, and spent a month in the same hospital where we are now, mostly in the PICU. So this is what I will be claiming today, because I keep wanting to recall that hospitalization, and although I learned some valuable things about Mallorie during that stay, ... that was then, and this is now.

Do not call to mind the former things,
Or ponder things of the past.
Behold, I will do something new,
Now it will spring forth;
Will you not be aware of it? Isaiah 43: 18-19

Mallorie had the tube put back in her throat last night, at about 11:30 pm, and was put back on the ventilator. She had been having a struggle breathing for pretty much the entire time she was off of the vent, and no one is sure if what was going on was seizures, or not, because she would be fine for a period, and then really struggle breathing for about a minute, then calm down again. Yesterday morning, I began timing the events, and they were happening every 5 minutes, like clockwork. So she is back on medications for seizures, and will go home on them, which is completely fine with me, now. It may or may not be something she needs in the long, long run, but it sure doesn't make sense to not eliminate that as a possibility while the goal is getting her breathing easily on her own. Last night, before they put her back on the vent, her color didn't look good. When I went back to see her after they had her back on the vent, it was easy to see that the decision was right (not that I was questioning it at all) - her color was great, and she looked so peaceful.

She's not been receiving any feedings while she was off the vent, because of not wanting to have her aspirate while she was struggling so much to breathe. Now that she's back on the vent, they just restarted her milk feedings, and I'm happy about that. Good nutrition seems like it would help make her stronger. .

Not much else to share today. She just looks more rested right now. They plan to feed her a bit, and then try testing her response to changing the settings on the vent - probably not till tomorrow, though. They plan to watch closely when it's time to take her off the vent next time, and maybe even have an EEG going on at the time. We'll see.

Long hard day Tuesday

Mallorie is still without the tube, but she has had a tough time this way. It almost looks as if she is having some sort of seizures, because she has regularly occuring periods of really struggling to breath with the BIPAP mask on, then she will settle down and breathe slowly and regularly, and sometime even stop breathing, ... and then will have the struggle again. She had to move to pretty high settings on the BIPAP to keep her oxygen levels up today, because I guess no one wants to put the tube back in, but it really seems like she's not doing so great with just BIPAP, anyway.

They were planning to do another EEG today to see if these periodic things are seizures going on, now that she is getting off the seizure medications they were giving her, but they weren't able to put the EEG leads on her head with the BIPAP cap in place ... and no one wanted to stop the BIPAP. There was one 2-hour period this morning when she was just receiving oxygen by face mask (a pretty high rate), and seemed to do well with that, and her blood gases (test showing how much oxygen and carbon dioxide are actually in her blood) looked OK, but at the end she had more struggling to breathe, and they said her chest x-ray looked like there might be an area of one lung that wasn't fully expanding, so they felt putting her back on BIPAP would help open that up.

Guys, I'm tired. And frightened. Frightened to leave the room for long (certainly I don't feel I should leave tonight to sleep in the waiting room), and not understanding what is going on with her. I wish they had thought to do the EEG while she was off BIPAP today, but it didn't hit me to wonder about seizures until too late to coordinate that way.

Please pray that they will be able to understand Mallorie and what is going on. And/or that she will just go back to normal!

On a positive note, my focus on her breathing makes me not so concerned about whatever infectious room we have to be in. :) Because I briefly lost it today when the nurse gave me the canned story about how they are following procedure by keeping the 3 empty rooms (that the night doctor told me about, as she wanted Mallorie not to be in the infectious room) open for some patients that "really need them." I was upset enough about it after she came from the other side of the room to this side without changing out all her protective clothing, that I felt like finding out if there was a charge nurse to talk to. But then I took a really long walk to the dining room across the street, and remembered that someone had emailed that she would be praying specifically that God would protect Mallorie from any extra germs while here, and I realized ... He can do that. So I let it go.

There's a sweet respiratory therapist tonight taking care of Mallorie. Maybe a fresh pair of eyes will help.

Monday extubation

Mallorie's tube was taken out today, and so far she is still that way. She had a bit of a rough time initially, from a swollen airway, and has needed some epinephrine breathing treatments, and has been on BIPAP almost the whole time since she got off the vent. When the mask slips, she can have trouble breathing again. But when it's on, she seems pretty comfortable. She is still rather sedated, and the neurology team thinks it's because of how long Phenobarbital stays in the body, besides the fact that they are still slowly weaning her off the meds, rather than abruptly stopping them. In a way, the lingering sedation is a blessing, since the airway swelling meant she had to have the BIPAP support ... and BIPAP does not look terribly comfortable to me.

Annabel's mom mentioned something about BIPAP or CPAP and watching for air leakage drying the eye out. It probably would have been on my mind already, but for sure, with her warning, I've been a tad obsessed. One nurse had left me a bunch of strips of Duoderm (an adhesive patch type thing) that she had cut for me to use, and we're using those to keep her the right eyelid patched.

And I'm a bit sleepy tonight. I stayed up till 1:30 last night, talking to another mom whose son was having a bad time, and is also on a vent. It was a pleasure to just sit with another mom of a child with extra needs, to know we both understand the sorts of things she needed to talk about. And it's a happy thing today to know her son is doing "a little bit better." When I listened to her talk last night, I listened to a story of a young man who needs lots of extra help with things other children can accomplish on their own, but it doesn't sound like he feels badly about his life. He's a joyful young man, and has a wonderful sense of humor. And is a bit spoiled, his mom admits. :) I so much want her to continue to have the joy of his presence in her life, and am praying for him today. But that's why I'm tired, and I hope this isn't too scattered.

Mallorie's new roommate has a couple of infections that are both very serious for little ones, so please pray that the infection control measures (hand washing or sanitizer, gowns) work well to keep Mallorie from contracting anything new, because apparently, neither Mallorie nor her roommate is going to get a private room. And all of Mallorie's cultures have come back negative for whatever they tested for. They are thinking (I think because of the CT results?) that she had a sinusitis that just wasn't clearing up, and that's what led to all of this.

No more seizures, tube out still, and maybe (?) will resume feedings tomorrow. She was scheduled to go have a PIC (IV) line placed tomorrow, which is procedure which would require her to be reintubated! But her IV that was placed in Beaumont is still in place; they had just had some concern because it had started bleeding at the insertion site a couple of days ago, and they wanted a really good, reliable IV at that time. But since now she's at a point where she's off the vent and all her meds that she is receiving can be switched to be given through her feeding tube, I am praying that they just decide to wait on that plan.

I figured it out.

Sunday - PICU

I woke up this morning (after sleeping TEN hours in the waiting room, yikes) and came into Mallorie's room to find her waking up, stretching her arm high above her head. She has been more and more awake today, which is great for us - not so great for her, as she needs to wait till tomorrow before she will have the tube out - so they will probably give her small amounts of sedation through the night to allow her to rest. She seems to be telling us she is READY to get the tube out, now that the seizure medications are getting out of her system.

Mallorie also has been getting milk all day through her g-tube, so I'm sure her tummy is feeling good. I was telling the nurse today that it feels like she has been doing a little Sleeping Beauty thing, and it's been good for her. The skin on her bottom had been pretty bad, since she'd been on antibiotics a few weeks ago, but here she's had a catheter in, and has had her diapers open and the nurses have kept air blowing through a tube onto the skin, and a wound care nurse gave some suggestions to try at home in the future, like chamomile tea directly on the skin. Her eye has been faithfully treated with lubrication and kept closed, since she's been asleep all this time. There is a white "patch" that is over the area of the ulcer which we are just leaving be, and putting the lubrication over it. I think it's some sort of scar, and I have to think that is a good thing. It's what the eye doctor said to hope for.

So no seizures, still some fever (I don't think it's hit 102 today). And planning on trying to take out the tube tomorrow.

She's had some amazing nurses this entire time. Allison in the day shift, since Mallorie has been here, and Megan at night. They advocate for things that matter to me, and make me feel safe going to sleep in the waiting room at night, and going to church today. Both should have a day off, starting tomorrow, but for tonight, I know Megan will be hovering protectively over Mallorie while I get some rest.

And today, a comical respiratory therapist who has me in stitches, whenever he is around. The last thing he said before he went off shift, was to the other therapist who had helped him suction and retape Mallorie's tube. If you were single ... and weren't my cousin ... you'd have to watch out. They really are cousins. Because of Tim, and the way he's been messing with all the people around him today, planning on making quilts like Mallorie's for the "Man Cave" that he and another therapist are creating, .... I've laughed so hard today, and it's a great thing.

That's it. All good news. Oh, and she's out of "droplet" isolation because the tests have all seemed to have come back negative, even for flu. Not that she didn't have anything, but she's at least negative for the things they would isolate for.

I hate that I can't show the pictures I got of her today in the big-girl bed, and moving her arm all around as she started to wake up. I can't use the cell phone for pictures in the PICU, because the phones have to stay off. And even though the kids brought me a cable for the camera today, I can't figure out why it doesn't work to download the pictures.

The girl can move.

This morning, I was given a report of things that happened while I slept, including that Mallorie had had some visible seizure activity, and had received an extra dose of medication for that.

This evening, the main neurologist who has been covering her, said that the 24 hour EEG they had been doing to watch for seizures had shown NO seizures. So I asked about the seizures the nurses saw last night. The doctor said, "Well, she was moving her legs, and we were going to ask you about that. Usually people who are paralyzed can't move their legs."

Well, Mallorie can. The nurse later asked me, "Purposefully? Rhythically?" Well, I didn't see what they saw, but I know if she listens to some Bob Marley, she does like to move her legs. And arms. Maybe she's paralyzed, but she does move those legs. I have no idea what they saw, but the EEG did not pick up any seizure activity while she was moving those legs. And it reminded me again, that it's really helpful if we can just learn not to let our moods go up and down with whatever the news of the day happens to be. Not that I'm good at it yet, but I'm very aware that I'm getting a chance to get plenty of practice.

So they are going to start to wean her off the seizure medications to see how she does. And they will see if she starts to wake up and try breathing on her own as they change the ventilator settings.

She's been started very slowly on milk feedings through her tube, and seems very comfortable. If I had a cable to download the pictures I got today, I could show them, but I don't. She's 3 years old, so she is sleeping in a "big girl bed" (adult bed). I had to quickly get some pictures before I let them know that when she starts waking up, well they're going to want to put her in a crib. Because the girl can move!

Thank you all for praying.

In the hospital at 3 years old

Mallorie is at one of the big children's hospitals in Houston. She tested postive for flu. Not confirmed yet, because only 1 of the 3 flu tests done was positive, but it's a possibility.

What she does not seem to have, but had yesterday, or at least was being considered for:

A fever above 107 degrees. She was hovering between 101 and 102 when we first got in her room this morning, and got tylenol for that.

Seizures, right now. And she's not on any seizure meds, although she definitely had a couple of types of seizures yesterday in the ER at home. But there was that whole 107 temperature thing going on. She is having an EEG done soon (the leads are being put on right now) to make sure there aren't any seizures that you just can't see, but definitely the visible seizures are gone, and without any more seizure meds to cloud the picture.

A shunt problem, by any of the testing done so far. She had hydrocephalus even before birth, and several months after she was born, she had a tube placed into an area inside her brain to drain excess fluid from around her brain down to her belly, where it can be absorbed easily. The neurosurgeons were able to take some fluid out of the shunt (sparing her a needle into her spine) and sent it to the lab for testing, and so that is still pending. But from what they saw on the testing done so far, it doesn't look like the shunt was a problem.

An abnormal heart rhythm. Yesterday in the ER, there was talk about a fast rhythm called SVT, but her heartrate is in a more normal range now.

What she does have:

An beautiful IV in her right arm, found via ultrasound by Bob, IV Guy in Beaumont. And now a 2nd one just put in behind her right knee by Tony, IV Guy out here. No one has even let me cut a lock of her hair off, because they aren't all that interested in her scalp veins. And blood for another blood culture has been drawn from the same spot.

A tube in her throat and a machine to breathe for her. Which is something I thank God for, and wish the whole world had the same access to superb medical care that we have in this country. They are seeing how she does adjusting to different vent settings, to see if they might be able to take out the tube today.

Her feeding tube, so she will be able to easily be fed at some point if they don't decide to go ahead and take her breathing tube out. If they are considering taking her tube out, then they will hold off on feedings, because it's safer to deal with that if the belly is not full. But I love her "g-tube." It's been a blessing so many times since they first put it in.

Breast milk in the freezer at home from some generous, loving, angels. John will go back home and return with some tomorrow, but if she needs some to start feedings today, we'll figure out something. Her nurse just turned down her sedation med, because they are doing some trials with her vent settings, to see if they can wean her off the vent today. She just had a period of apnea and isn't taking big breaths, so I am not sure today will be the day.

Please pray for her to recover quickly from this illness, and to bounce right back to being her same, loving, joyful 3 year old self. Her birthday was the 6th. She has a thing with hospitalizations on or just after her birthdays. The little snot. We love her so much, and I miss cuddling her. And kissing her sweet mouth. And having our family together.