Update on Mallorie

For me, not updating the blog doesn't always mean bad ... usually it just means too busy with work and then trying to catch up when I'm home again. But, sometimes it means things feel bad. The pause this time was from my low mood. I'll update about me, later.

I can't even remember what I've said here about Mallorie's eye. Mallorie's always had some "eye issues." And I've always been sort of fixated on her eyes. While I was pregnant with her, I remember looking at the Living with Trisomy 13 site and noticing that a good number of the photos showed beautiful children whose eyes appeared assymetric, and in the one prenatal picture we had of her, it appeared that Mallorie might be missing an eye (to me ... which is silly, now, considering that was probably something the doc doing the ultrasound might have mentioned, right?). But I was prepared for her to have only one eye, and tried to prepare the kids and John. But when she made her appearance, she had 2 very beautiful, bright eyes, and she seemed to watch the world very intently. However, we began to notice that in several of her NICU pictures, she would have one eye open and one closed, and sometimes when I'd call the NICU to ask for a late night update, the nurse would tell me, "She's peeking at me right now, through one eye." I wondered if the eye that was always closed had some sort of problem, was slightly smaller, had weak eyelid muscles? It took a long time to realize that the left eye that was always closed while she was "peeking" at us was not the problem. It was the right eye, which would stay open during sleep, which was the problem eye.

Then we noticed a hazy area over a section of that eye, right in the zone where the eyelid stayed open while she was sleeping, and others noticed it, too. John even tells how once a nurse tried to "wipe" off the hazy surface with a q-tip during a hospitalization, thinking it was a bit of an eyelash or something. Makes me cringe, now, thinking of that, but what did we all know? We started her with an eye doctor, who said it was due to not fully closing her eye, and maybe a decreased blink response, and suggested different drops and ointments to manage the problem, none of which caused any improvement, but might have kept things from progressing too fast. We also started taping her eye closed, because another mom told me that is what they do for her son. When I asked the eye doctor about that, she agreed it might help, as "lids are better than lubrication."

Then I had surgery, and during that time, Mal got extremely dehydrated, and suddenly what looked like a superficial haze over her eye surface turned into a depressed area. We have been told that the only appropriate treatment at this point is to get her eyelids sutured together to allow the eye to heal. Remembering lids are better than lubrication, I "get" this plan, and there's stuff all over the internet about this. Some sites say there are really no "risks" associated with the procedure. Others list things such as the stitches tearing through the thin tissue of the lids and causing permanent damage to the lids and scarring.

Here are the risks I think of.

Permanently losing visual input (if the procedure is permanent, as the doc suggesting this surgery had casually said it probably would be). Her first eye doc said specifically not to tape her eyes during the day, because she would lose vision.

Risk to her from being put to sleep for the surgery.

She has always done really well being put to sleep and had no problem being extubated. Except once. And that time kept her in the hospital for almost exactly a month, most of that time in the PICU on a vent. It was a month I never want to relive. Our entire family suffered greatly in that month, and we came close to losing Mallorie more than once. Dr. B had to talk me down at 3:30 am when I was losing my mind because I thought they were going to kill Mallorie through just not seeing HER. There was great and continued pressure to agree to a surgery that I believed in my heart she did NOT need, and would have put her at more risk at that particular point in her recovery. I learned through that hospitalization, that as hard as it is to fight, all alone, for what you believe in your heart is right, you have to. Her primary doc during that hospital stay told me at the very end of her stay that he learned from her, and hoped he would be a better doctor because of it. That we were probably right about Mallorie, and they were probably wrong. And that she was lucky we had stood firm.

Mallorie has had respiratory problems for over 2 weeks, now. It started with a cold, which she got over VERY quickly, faster than the rest of us. (THANK YOU, milk mommies.) :) But she has continued to have nasal congestion and (obstructive) apnea from just working so hard to breath through nostrils swollen closed, and a dry throat. She snores, snores, snores, snores, ... and then poops out. She has had stretches throughout each night (except last night) of oxygen saturation levels in the 70's, and has to be continually repositioned, repositioned, repositioned, until she will breathe again. We have to run oxygen near her face at night (not good for keeping the eyes moist, BTW) just to keep her levels above 85%. So we've obviously had to postpone the surgery because of her respiratory situation, and all the time I've been praying that God would either just heal her eye, or that someone would come up with an alternative to needing to put her to sleep to sew her eyelids closed. Neither of these seems to be happening (yet). And I'm also praying that I will feel more peace about this procedure if it is what needs to happen. We obviously are not willing to risk the loss of her eye, just because we don't like the sound of the plan being offered.

And then I found this a couple of days ago. Cyanoacrylate is ... Crazy Glue, Super Glue, whatever you call it.

Please pray that someone whose opinion about Mallorie's eyes matters, would have open eyes and an open mind to at least wonder about this as a less-risky alternative to anesthesia. Maybe just as a first resort, holding the possibility of permanent closure as a back-up if this isn't successful. I know, I'm asking for a prayer for a miracle. But that's what I do these days. Luckily, I know a God who does miracles.

Some old pictures I found on a CD today.

Exceedingly abundantly. (You know who you are.)

Earlier this evening I got a text from God. I know, crazy. But a friend sent a text that might as well have said, "Everything you need, I will provide. Before you have time to think of it all, I will arrange it. love, God"

What the text was about may or may not be how things are actually supposed to work out, but that isn't the point. I was simply reminded, the night before my first MD Anderson appointments, that my God shall supply all [my] need, according to His riches in glory by Christ Jesus.

I can pray big, because God is able.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
Ephesians 3:20-21 NIV

Appointment on Wednesday

I have an appointment at noon on Wednesday at the major cancer center in Houston. This is a wonderful thing, a huge answer to prayer, to not have to wait weeks and weeks just to get an appointment.

We are so grateful to those who are helping with the kids, including Mallorie. John got the information about the appointment, and was told to plan on being there 2 days. I don't know if it was "at least" 2 days, or just plain old "2 days." A friend who has had to go to the same medical center recently said that she had been told to plan to stay as long as 5 days, so that's been on my mind, wondering.

I'm nervous (major understatement here), but more relieved to have this day come because it feels like life is on hold right now, knowing nothing of what to expect. Will there be weekly treatments, more often, less? Can any be done locally, or all out there? I think that some of those answers, if we get them, will help with adjusting our lives to this. Some answers, I know, are just to wait and see. Never has been my biggest forte, the wait and see part, but I am sure I will learn.

The kids are starting to really show signs of problems coping with the news, so please pray for them as you think of us. They are just kids, and it's very hard on them.

Revealing

I'm sharing a little more, because it feels a little like being a fraud not to update the balance to the last post. Debbie, you wanted updates - well, here is one.

I'm not strong, not really. And since Mallorie, I cringe when I hear it said, because I know more than anyone how weak I am. During the time I carried Mallorie, I had no reason, really, to expect her to be born alive, or if she was, to be with us long. I think it took me a month (because of my habit of "trying" to be strong, I guess) to reach the end of my own reserves, pick up the phone to my OB, and ask for help. She found me the most wonderful priest/therapist to meet with, and both he and the OB learned better than anyone else how very not-strong I was. On each and every appointment with either of them, basically 90% of what I did was sob. It was therapeutic, mainly, because I was not alone, and they patiently allowed me to let it all out, to stay current with where I was. There were no epiphanies, and there was no "resolution" or growth during that point, that I saw, or that they probably saw. I was a dripping wet rag, wrung out weekly, by the time delivery approached.

But God did a work in me that I really didn't see the results of, until this side of delivery. I started the pregnancy as a girl who knew in my head and honestly believed that I was loved by God. But it was more like knowing there is a loving God and that He created me, and gave me gifts ... just as He loved everyone. I had zero doubt about that part. But I never, ever felt very special to God. Yet, the unwavering belief I had when we left that ultrasound where we learned about all the "anomalies," and went over to see the OB, was that the baby I was carrying, with all his/her abnormalities, was all about God letting me know He loved me specially. Where did that thought come from? I have no doubt it was placed in me by God, because it sure didn't follow logically.

I didn't instantly feel special to Him, either. That change took several months to accomplish in me, and lots of ups and downs (mostly downs). I am so grateful for that time, though I think sometimes that if I knew then what I know now, it would have been so different! I would have laughed in ultrasounds, instead of staring up at the ceiling. But, without going through those dark periods during which I had no idea at all of the outcome, I would not be where I am today. Not because Mallorie lived (though I praise God every day when I look in awe at her grin, her healthy body and bright spirit), but because He stayed close to me that entire time, understood me, listened to my prayers, my pleading, my cries, all of my thoughts, and never seemed to not "get" me. I was never abandoned, and I watched first-hand as God provided for our family just the right people in our lives to pray, to support us, and to go through all of it with us.

So here I am, again. After then initial shock settled in, true to form, I sank. I had read that getting lots of sleep was important in fighting cancer, and since I had just had surgery, I did a lot of sleeping, when I felt like it. I got tired really early of telling the same story to everyone in my life, so I stopped answering phones, and left it to my family to do that. I didn't sleep all day, but didn't do a whole lot else, really. THAT is me. I'm not strong, I'm not brave, I'm not really full of faith. And I'm an impatient mother and wife, and sometimes just plain mean if I'm really stressed.

But what I said about the One who knows this road? That part stays true, no matter how much I go up and down. And the difference this time is that I have a history with my God, now. I know Him as a Father and Brother who will be there every time I look for Him. I will see Him sometimes in the faces of sweet sisters and brothers who bring food for my family. In the form of donor milk for Mallorie that arrives just at the right time, and erases my fear of having to deal with dietary changes for her right now. In the texts and emails that arrive to tell me I'm being prayed for, or that include scripture verses that speak truth to my spirit. In my husband's voice when he tells me that for the first time in his life, when he was in a group of men (for his ACTS retreat reunion), he felt that he truly fit just as himself, no effort, felt accepted. In my children's voices when they tell me funny stories that tell me in the subtexts, that others are loving them and watching over them.

I guess my biggest need, besides prayer for healing, is that I will open myself during this time to the people all around me who longed to be God's arms of comfort while I was pregnant. Because THIS time I do know what I didn't know before. That I am not strong, but I don't need to be. That I am not alone, and am not meant to be.

The verdict

I had my follow-up appointment with the surgeon this afternoon, and learned that what was removed was cancer. Well, that was actually a shock, more, I guess than it should have been, but I had no strong feelings that it would be positive. Shows what I know.

I do have to have chemo, now. Talk about a whole new road ahead, and I don't know the route. But I do know Who does, and I am still amazed by His care for me. The tumor that showed up on the CT that led to us finding this diagnosis, was not in the bowel, but nearby. I had several months of recurrent vomiting, that resulted in the CT being done in an ER visit. Then, one more episode of vomiting, and then NOTHING. The last time I had the problem was June. But nothing about this tumor would have caused symptoms, yet. In fact, the surgeon today said that it might have taken a year more for me to start having symptoms, and by then, it would obviously have been more advanced. So I've been thinking that God just wanted it out, and allowed me to have all those episodes just long enough for someone to have a reason to do the testing, so this could be found early enough.

I have prayed during this waiting period, that it would NOT be cancer, and kept adding, that it was because I just want an easier route. I mean, God already knows, but I guess I wanted Him to understand that I feel safer with Him now, since Mallorie. Safer in His choices for me. More confident in His love, so I didn't always say it, but He knows what I meant ... that I knew He knew best for me, and I was deferring to Him. And God loves me, and clearly wants me to grow some more.

So please pray for me while I learn and grow. And for my family.

Home again, home again.

Mallorie's bloodwork looked good enough this morning to go home. Becca and Tamara had set me up with movies & DVD player to help me not be bored in my own recovery period, so I finally got to watch a bunch .. and silly me, got just 3-1/2 hrs of sleep last night before the morning labwork had to be done. Then discharge stuff, then speech therapy, and home. I'm wiped, but Mallorie is just happy, and herself!

And I heard Dr. B got good news today. I think she needs her own blog. :)

My appt with the surgeon is tomorrow, so pray as much as you like for good news for me, too. :) It'll be another long day, because Mallorie sees her kidney doctor in the morning, and I have lots of things to discuss with her, since Mal is back on the potassium supplements along with the sodium. Then my own appt will be in the afternoon.

Anyone else feel this tired?? But I'm such a happy girl, with Mallorie back home and all the other good news around here.

Ida does, too, do scalp IV's. So does Mary.

My turn in the hospital with Mallorie; she began vomiting this morning just before her follow-up appt with Dr. B, and her last labwork didn't look good enough to send her home with. So we have a beautiful scalp IV in place, and fluids going in that way, and through the wonderful g-tube. I am so grateful for good nurses who don't give up, and for the pauses for prayer prior to attempting a "stick," and the praises to God for surprise successes. And for good friends who stop by to check on us (thanks, Pam). And for great medical care.

My follow-up is Wednesday, so I hope Mallorie is discharged by then. And Dr. B's surgery will be Wednesday, too.

I'm here and prayers for one of our real-life "angels"

OK, since Annabel's mommy "outed me" (and I don't mind, seriously), I might as well update. I only learned Friday evening, at about 5:30 pm, that I needed to have surgery. I was given the option of waiting till after the holidays. Um, no thanks. Not sure what kind of holidays we would have had, waiting for the inevitable surgery! So I was able to be scheduled for Wednesday, and was safely back home yesterday, and those of you who knew to be praying for poop? Well, you may stop, now. :) Thank you.

I will learn more about what comes next after the post-op appointment which hasn't yet been scheduled. And I know, now, the secret to not gaining weight on Thanksgiving.

The biggest thing that is weighing on my mind, now, is that my very dear friend, Dr. B, is waiting for something very similar to take place soon. She is a gift God chose for me and my family long before Mallorie had been conceived. She was one of the special ANGELS in the delivery room when Mallorie made her appearance, after praying for her in the nighttime before. She is one of the most vivacious, giving, fun girls I know. When she was pregnant with her youngest, I hear she did handsprings in the office to freak out a coworker who had gasped when Dr. B had raised her arms over her head, because of an old wives' tale about choking the unborn baby that way. Years ago, when I worked on the pediatric unit floor, if I was clocking in and heard her voice, I grinned and took off to get into the nurses' station before I could miss the chance to have her start my day off laughing. I wish all of you knew her, but even if you don't, please pray for her healing, and for her to be filled with peace today and in the coming days.

She's the one who is spoken about in the sidebar to the left, ....her amazing pediatrician [who] said about examining her at birth, “I looked into her eyes, and she looked back at me and said, I’m here for the long haul, chick."

So are you and I, Dr. B. Here for the long haul. As you have said before, we have far too much work to do. We adore you. I just want you to have the peace I feel for you this evening, too.

PS, John has Mal at the ER tonight. Hurry up and get well soon! We have lots of work for you to do. We're thinking it up as we go. ;)

Our little Picasso

Vital Stim

iPod You Can't Stop the Beat (Hairspray)

Outside with Hannah

New Becca sensory room

I love daddy

Love my hand, too

For Arthur C.

Hammock joy

Sorry. We've had some sickness and some more serious health concerns in our home, so haven't been thinking of any blog in awhile. Do these make up a little bit for the absence?

Constipation woes are gone. It's either extremely well managed with our new poopy program (hate "bowel program") of cod liver oil plus Baby Calm (magnesium & vitamin C) plus Activia . . . or it's another GI virus. (Man, will I be upset if it's only a virus.) The program is working SO well that we have discontinued all Lactulose, and none of us can remember the last time we gave a 3 am enema! They had been nightly, until we brought her in to see the lovely Dr. B, who read me the riot act about how my pig-headedness about chemicals was hurting Mallorie. Well, my interpretation.

Cloth diapering is a bit harder when there's poop with every diaper, though. :) Do you really think you hear me complaining? I assure you, I'm NOT! Cloth is way easier than anyone led me to believe, as long as you have a washer, and an extra load a day beats giving enemas, hands-down! And we don't have stinky trashbags full of poopy disposables to take out all the time. This was one well-kept secret, I tell you.