Power Plays

Noelle's surgery was hard on everyone, including her brothers. After seeing his sister looking like this:

http://jerheather.blogspot.com/2012/07/scenes-from-hospital.html

...John was stressed out. He doesn't like the thought of surgery, either, because it makes him very squeemish and nervous. He is also aware that cancer can claim the lives of some of its victims. He was visibly on edge, with a short fuse and screaming a lot. It wasn't his usual scream, the "My parents are so mean!" or "My brother is so annoying!" scream. It was more of a "I just can't take it anymore!" kind of scream, shrill and shreaking. So that tipped me off that I had to do something to help him cope with his sister's surgery.
Initially, nothing came to mind, until I prayed for guidance. Then the thought came about the medical play that they did in our hospital. Children are given medical supplies to use on dolls or stuffed animals, and it is said to help them process and deal with their own medical treatment. I didn't know how powerful it could be, however, until John and I tried it for ourselves.

I gathered up some spare medical supplies of Noelle's: tubing, guaze, alcohol wipes, tape, a mask, dressings, a measuring tape, syringes; and found our unused Fischer-Price doctor's tools. I put it all in a ziplock, got John's Cabbage Patch Kid, and presented it to him. Instead of the neutral, somewhat disinterested response I was expecting, I got an emphatic, "Thanks, Mom!" and he immediately started. I played with him, suggesting procedures and showing him how to use the supplies. I asked leading questions, like, "Does Davy have cancer?" but John really drove the play. He enjoyed putting a Broviac dressing on his doll, just like we do every Sunday on Noelle, and came up with some creative ways for using the equipment. We taped tubes all over that doll: at that time, Noelle had eight or nine tubes and wires in her. Davy's tumor was in his arm, John said, and he needed to have surgery. John made a careful insicion with a pencil, removed the tumor, and bandaged him. He also administed lots of chemo through the tubes, and finally, declared him cured. He wanted to leave all the tubes and tapes in place to "remember the people who saved his life." I love it when my son shows these moments of thoughtfulness and sensitivity.

The patient, following his successful treatment

When Jeremy's sister came home from the hospital that evening and saw the doll, she exclaimed, "Hey! This looks just like Noelle!" Exactly what I was going for.

The next day I realized, no more frantic screams. No more about-to-lose-it John. I was so surprised that it had worked so well! They say play is how children learn and process their world, but it's hard to know how true a statement that is until you've seen it firsthand. I was reminded of Liam's speech therapy (which would more accurately be called communcation therapy), and of the times when his therapist would say, "You've been playing with him more, haven't you? I can tell." She could actually detect improvements in his communication on weeks when we had spent more one-on-one time playing. She would say "all speech is rooted in play," and it amazed me. My son's limited communication was tied to his trouble relating socially to others, and when he practised the latter, he improved the former.

Both of these examples emphasize the power of play to me. Kids need to play, but I think what they really need, what they can't get on their own, is for us to play with them. My guidance in John's medical play helped him process a traumatic stress in his life, and widening Liam's world in play with him will always be important in his development. But your kids don't need to have trauma or autism to benefit from your playing with them! So please, go play with your kids today!

Missing Daddy

Noelle and I have been out of town for radiation treatment for three weeks (with another two to go) and Daddy is really starting to miss us. We took some video for him when the therapy dogs visited today. Noelle really likes animals, but is timid around real ones!

In this one she is startled by the dog's kiss and doesn't like him very well after that:

This encounter goes better. She even laughs at herself after bravely reaching out to touch him!

And this one was taken earlier today, when Noelle delivered a letter that had arrived from her brother:

Oooo, new computer!

I'm writing this post on my new computer. It's the cutest little baby laptop you ever saw! It has a 10 inch screen (about 5 x 9 inches), and the guy at Best Buy called it a "netbook," because I guess it's not good at too much other than for using the internet. It's my new computer for Houston, where I will be leaving for in one week. I'll be there for an entire month, so I'm considering thinking of it as my "summer home," though convincing myself I'm taking a vacation is proving slightly unsuccessful....

Mini Me

Scenes from the hospital

By now, we're pretty used to hanging out in our second home the hospital. Here are some pictures of us in our new digs. I have to apologize for the sideways photos. They are so tacky, such bad form on a blog, I know. But I have tried to flip them and it isn't transferring from iPhoto to Blogger and I'm doing this from Noelle's hospital room while trying to get her to sleep and I'm all out of patience.... So please bear with me and turn your head 90 degrees to the left as needed.

The day after her tumor was removed. Still pretty sedated and not wanting to move.
But look at all those lines! She's one hooked-up little lady. The gauze on her chest is covering her central line, keeping her from pulling it out (the surgical incision is just under her abdomen, and is glued shut).

Starting to feel more like herself, with Aunt Nanette. Two days after surgery they put in a "nose hose" to suction her stomach, which she had about three days. It calmed her vomiting.

Feeling a little dopey from the morphine, but we are happy to see her sitting up:

The morning after her first full day of EATING, feeling much more chipper:

It's now been one full week since her surgery. Would you believe the tumor measured 8.1 x 6.1 x 3.4 cm?! Pretty big for a baby. But she's healed up nicely, and so this morning they gave her a blood transfusion, and started chemo this afternoon. She'll be good to go home tomorrow or the next day! Yippee!

A few quick Liam cute things

The event that caused this blog post will come after the following two cute "Liam-isms":

• "Excuse me" --> LIAM TRANSLATOR --> "I'm scuse me"
• "Quesadilla" --> LIAM TRANSLATOR --> "Case of dilla"

So this evening, Liam was eating the last piece of a delicious cake our neighbor brought us after they heard of Noelle's diagnosis.  He was eating it real slowly and avoiding huge sections of it.  He kept asking for something else, but I was determined that since he got the last piece, he was going to eat it.  After a while (and eating around 2/3 of it), he said, "I'm all done.  This cake is too spicy."

Of course, the cake was never spicy, so we just assumed he was using the wrong word, but I didn't press the issue.  We put him to bed.

Two hours later, Grandmommy is cleaning up his dessert plate from the table, and she decides to take a bite of what was left.  She starts laughing at the same time she's cleaning out her mouth.  Liam had used one of his favorite toys at the table it seems: The cake was covered in pepper.  Too spicy, indeed.

On Cancer

Lately I've been thinking I could totally write one of those blogs by moms of special-needs children. For lack of a better name, it would be called "Special Needs Mom." I'd have a unique voice, you see: a mom with chronic illness raising an autistic son, a daughter with cancer, and another son with... a bunch of stuff. I would have lots of followers and get lots of feedback. We'd share stories and tips and together would create a community of support and learning and I would feel heard and understood.... But everyday, life happens. So I think, maybe next year. Or in a few years. Or posthumously.

Today a lot of life has happened. Aside from an evaluation and therapy for Liam, I've spent hours in the hospital. Right at this instant I am holding my infant daughter as she sleeps, IV fluid dripping through a tube and straight into her chest. She will get the first of many doses of chemotherapy sometime tonight while I am sleeping. I strikes me that there are some things I know about her future, and a lot that I don't.

I know her hair will fall out. I know the large bulge in her pelvis, which has practically doubled in size since I first discovered it, will start to shrink. I know she'll lose her appetite and slow down on her growth. I know she'll be in the Lord's hands. That whatever the outcome is, He has her best interest in mind. I don't know how hard this is really going to be, going in and out of the hospital for her doses of chemo, for I don't know how long. I don't know if the chemo alone will be able to shrink her large tumor enough. I don't know if there will be long-term effects. I don't know whether she's in the 65 percent who survive this type of cancer, or the 35 percent who don't. It's okay not to know that, though, because of what I do know: The Lord is in charge, and He loves us. I have a forever family, sealed in the temple of God. Life doesn't end at death. And most of all, (despite occasional panic) I feel an overwhelming peace and confidence from the Spirit of God telling me that everything will be okay.

So my life goes on. In a way, having a couple of high-maintenance boys along with my sweetie daughter helps me cope with her cancer: there is a lot to distract me, to keep me from brooding on depressing things. So while I won't have the time to write the blog I envision, at least I will enjoy being a mom to these three hooligans. We'll figure it out as we go along.

Here are some pictures we took for fun one day while I was pregnant with Noelle:

Jack Fell Down and Broke His Crown...

And Noelle came tumbling after.

I dropped Noelle down the stairs. It doesn't sound good, and it wasn't. The stairs are wood: no carpet to soften the blow. I tripped while carrying her a few weeks ago; I just got a few bruises, but it was much worse for her. The short version is that she cracked her skull and we were in the hospital for a few days.

The longer version is that the day after we fell, her head was really starting to swell, becoming quite misshapen. I had one of those mothering instincts that said: "That just isn't right. I'm taking her to the doctor." And, indeed, it wasn't right: the doctor said to take her to the ER. So the fun started.

Child Protection always gets involved with injuries like this. I told my story countless times. The police ran a full investigation (complete with a search of our house at 4:30am; I've had my Miranda rights read to me: check that off the list!). Noelle got a CT scan, X-rays from head to toe, and other things she hated. I stayed up all night the first day in the hospital. We were released later the next day, but went back again the day after.

Unfortunately I didn't have a camera, so we couldn't take a picture of her with all of her sweet wires coming from her.

I had taken her back again because she vomited, was lethargic, not eating, and running a fever. Turns out she had a cold. But given her injury, you don't want to take chances.

Now she's doing great, apart from having decided she likes to be held a lot more. They said the fracture would easily heal on its own. There was a question as to whether there'd been any bleeding on the brain, which could have caused brain damage, but despite a disagreement between the radiologist and the neurosurgeon, they decided there wasn't (phew!). All the same, they had us give her anti-seizure medication for a week, just in case.

Are you impressed with me? Because I'm impressed with me.

This is only the first part, or actually, the last part, of the story. Because it's 11 and I need to get my bod in bed.


Let's backtrack.

Two minutes ago, I made myself a celebratory ice cream cone.

Five minutes ago, I submitted a paper to my professor on the poetry of Ezra Pound and e. e. cummings.

This morning, I woke up with a bad sore throat. The two youngest kids are sick, too.

Four days ago, at nearly midnight, I drove home from the hospital with Noelle.

Fifteen minutes before that, I submitted an essay on a story by Earnest Hemingway. I wrote the essay in the E.R.

Almost six hours before that, I brought Noelle to the E.R. for the second time in a week. She had thrown up, was sleepy, and running a fever, so they wanted to see her again.

The day before that, at about seven in the evening, Jeremy arrived home with Noelle and I was ecstatic. We all slept the night through!

Shortly before lunchtime, Jeremy came to the hospital and I went home to "nap." Liam had a fever and didn't take his nap, so neither did I.

That morning (Wednesday), I woke up in Noelle's hospital room after getting maybe twenty minutes of sleep. Then I tried to stay sane with a baby who refused to be put down but was connected to the wall with numerous cords. Bless the nurse who brought me breakfast. I skimmed through the rest of the Earnest Hemingway story.

A few hours before that, they admitted Noelle for a skull fracture and possible subdurmal hematoma and we moved from the E.R. to a room upstairs.


Now that I've got your attention.... Join us next time for the next exciting installment of This is Heather's Life.

Before and After: A Birth Story

 Before:

Here I am in all my glorious pregnant largess. This was a few weeks before giving birth, so I actually get larger even than this. That folding chair is in my bathroom because I was too tired to stand up while brushing my teeth!

  

After:

Here is Noelle, just about three hours old. She was my biggest baby at 8 pounds, 9 ounces and 21.5 inches long.

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As a somewhat seasoned childbirther, I opted for a freestanding birth center this time, rather than the hospital. For me, the hospital carries several things I'd rather do without:

• Having to waddle into the hospital, get up to the seventh or whatever floor, stop at registration to sign in, then go to triage to prove to them that I'm in labor... all while stopping every few minutes to bend over and moan in pain. 
• Not knowing the midwife or doctor who helps me have my baby. Obstetric groups are so large that I was very unlikely to have the one who'd seen me through my pregnancy.
• Getting "the look" from the nurses since I'm "one of those noisy ones." (I'm telling you, though, vocalizing the pain really helps to dissipate it.)
• The painful tears and stitches I'd had each time before, giving me grief for weeks after. I heard that giving birth in a tub (water birth) could prevent this, and the birth center would allow that.
• Having to share a room with another mom and baby after birth. (Read: being woken up twice as much.)
• The hospital messing up my dietary restrictions at EVERY meal.
• All the rules I didn't need. By the third baby, I knew exactly what I was doing. The less hassles, the better! 

Plus, I just wanted to try it! As for the pain of an unmedicated birth, I'd done that before: Liam came so fast there was no time for medication. Besides, the way my labors go, the longest amount of time in pain is spent before they even let me come to the hospital. Might as well grin/moan and bear it!

The plus side of the natural birth center was that I got to know the two midwives there very well; the center had a relaxed, homey mood with pretty grounds and gorgeous view of the mountains; and they were going to let me have my baby any way I darn well pleased. So on to the story.

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My morning started early October 15. The first contraction woke me up at 1:30am and I knew she was coming. For the next few hours, I stayed in bed, dozing between contractions. At 7:00 I woke Jeremy up to tell him and to discuss our plans. It was a Saturday and we'd been planning a very full day, including buying a car. We decided to go ahead and send Jeremy off to get the car (because isn't that the natural thing to do while your wife is in labor?). He took the boys and a friend to help. I was glad to have a quiet house. I stayed in bed to get a little more rest, then showered and was up by noon. Though I was tired from lost sleep that night, I knew I had to stay up the rest of the day, or labor would go nowhere.

Jeremy and the boys came back that afternoon. My contractions were getting more intense, so we sent the boys over to our friends' house. By 4:00 I was in a lot of pain and wanted to go to the birth center: that big tub of hot water was the only pain relief I had. Jeremy called the midwife, but since I wasn't in "textbook" active labor yet, she said to wait two or three hours. I knew I was in active labor -- this wasn't going to slow down and I felt her pressing -- but wasn't up to arguing. So I continued pacing around the house, stopping every 5-7 minutes to press my head against the wall, moan, and bear the contraction. When I'm in labor, I tell myself I can do anything for one day, and it's true, but I was having a harder time emotionally than with my other labors. This pregnancy had been so draining on every level.

At 6:00pm Jeremy phoned the midwife to say we were coming. I got into my brand new, spic-and-span Mazda 5 minivan (infant seat installed) and began our twenty minute drive to the birth center. I was ever so grateful for perfect, new shocks that day in that vehicle!

As we pulled in to the birth center parking lot at 6:20, I saw that the midwife had not yet arrived, and was overcome with the hopelessness of it all. (It wasn't really hopeless. I was just in that phase before transition where everything seems hopeless.) She pulled in right after us, and I bawled with relief. Jeremy helped me inside, and with contractions coming about every 2-3 minutes, I had to stop a couple of times to put my head on his shoulder while they passed. I was grateful there was just a short distance to the bed rather than the hike the hospital would have meant. The midwife checked my dilation; I think it was an eight (on a scale of 1 to 10). Jeremy tossed me my clothes to change into, turned on some Enya, and started filling up the huge, inflatable tub that I was looking forward to sitting in.

The hot water was soothing and provided some relief, but I felt it was nearing time to push. My midwife said to wait for the birthing assistant, a nurse, to get there, which was another five or ten minutes. Jeremy stood next to the tub, holding my hand, and I began pushing that baby out with all my might. I apparently pulled fairly hard on Jeremy's hand: he reports bracing himself in a doorway, doing all he could not to fall over. I've been lucky in childbirth not to have to push and push forever, like some women, and this was no exception. In just a few pushes, I recall saying something highly intelligent like, "Here comes the baby!" And come she did, at 6:50pm. Then I exclaimed, "I did it!" (Because galdarnit, that was hard!) The midwife put her in my arms as I cried in relief. Jeremy took some photos here, but since I'm crying -- loudly -- I'm making the ugliest expressions and I won't disturb you with those images. I heard the midwife say to the nurse, "She's really pink, I think she's fine," and then I realized she hadn't cried at all. Then the midwife said water birth babies are more calm. I suppose Noelle didn't get the same cold-air shock as John and Liam. She was fine. After a little while, I handed her to someone (I can't remember who!) and climbed out of the tub.


So thus began our life with Noelle. Jeremy held her a while. I nursed her. She got weighed and measured. I did not get stitches. Jeremy brought me some dinner, and by 11pm, we were leaving. I was utterly exhausted, but filled with joy, confidence, and love. Childbirth is a singular experience. It is at once incredibly painful and empowering. Once it begins, it cannot be stopped. It takes you to the brink of what you think you can handle, and then goes beyond into brand new territory. It releases you from months of sickness or discomfort in one grand, cathartic leap. And it gives you a precious, perfect miniature human being who will forever be connected to you by the bonds of family. Amazing.

Coming Soon...

It's been far too long since I wrote anything on here, but I assure you, a post is in process. A very long post. Since I usually write very short posts, and because my hands are just a little busy with a baby who won't let me take a nap and one boy who won't do his homework and another boy who won't stop screaming at the first boy... it's coming along slowly.

In the meantime, pick out my husband from this image: