Wednesday, July 28, 2010

The Waiting Game

Wow, I just don't know where to start. You are all amazing. Thank you for every comment on the blog, Facebook message, e-mail, and phone call. Thank you for every word of encouragement and support. Thank you. Life sucks right now, but I know that it will get easier. I know that we just have to take one day at a time. But I cannot tell you how much every little bit of support means to me.

So here's the latest news on Roo. We were supposed to have results from his last round of blood work early last week… then by last Friday… then by Monday… and today, we finally got the call. We got the results, but not a lot of answers. First of all, he definitely has Down syndrome, that much has been confirmed.

As for chromosome 15, it is definitely… different. I don't want to go into too much detail, primarily because I am completely non-medically-knowledgeable and don't want to say anything wrong. But basically, it looks like a piece of that chromosome is bigger than it should be. At this point there are three possibilities: 1-it could be perfectly normal, just a variance that can happen from person to person; 2-it could be extra genetic material, but in a segment of the chromosome that doesn't contain any active genes (in other words, no big deal); 3-it could be extra genetic material in a segment of the chromosome that DOES contain active genes that are associated with growth and development (in other words, a problem).

The good news is, there are 2 "big" conditions associated with chromosome 15, and he does NOT have either of those. This is a huge relief to me, because I have actually lost sleep worrying about those. If there is a problem, it is likely either a developmental delay and/or a gene that is associated with autism. If it is that "autism gene", it still does not necessarily mean that he will be autistic, but only that he will be more susceptible to it.

The bad news is, we have to have more blood drawn, and it will take another 3-4 weeks to get the results. It also has to be pre-authorized by our insurance, so it will probably be at least a week before we can even get the blood drawn.

So now we wait until we get the blood taken… and then we wait some more.

I can't say it feels good to wait, but I can say that I am learning a lesson. For the past several weeks, ever since Roo's initial diagnosis, I have been waiting for it to be done. Not "done" as in, it's all a bad dream and it's not true—that, of course, would be lovely, but it's not what I mean. I've been waiting for a final diagnosis, for someone to say, "Here is what is wrong, and here is what we need to do about it, and now you can move on and live your life." Here's the lesson: It's not gonna happen. The Down's has been confirmed, yes, but it is far from done. Even once we know what is happening with chromosome 15, it is far from done. We don't—and won't for a few years yet—know how the Down's will affect his cognitive ability. He has been diagnosed with a heart condition that is going to require follow-up and care over the next several years. If the problem with his tear duct persists, he may need a procedure done on his eye. And more things will pop up throughout his life.

It won't be done. And you know what? That's just life. But it will be OK. We will be OK. Roo will be OK. We will take it all one day at a time, one hit at a time, one happiness at a time. Because there will be happiness, too. (There is happiness, even now, truth be told.)

So… I guess we're not really waiting. We're just living. There will be good days and bad days—Monday was obviously a bad day, today was overall a good one, in spite of the frustrating call from the doctor's office. I have no idea what tomorrow will be. But I don't have to worry about tomorrow. Do you know why? Because "tomorrow will worry about itself. Each day has enough trouble of its own." (Matthew 6:34)

Monday, July 26, 2010

Top 10 Reasons that Life isn’t Fair

So I recently decided to take part in a blogging challenge to improve both my readership and my skills. As with everything in life, I am already impossibly far behind on it—and it just started this week. Anyway, day 2's task ("we" are now on day 8) was to write a list post. So here is a little glimpse into how I am thinking and feeling right now…

The Top 10 Reasons that Life isn't Fair
  1. Because more is supposed to be better. Yes, I can see that missing a chromosome could be a problem, but an extra one? Shouldn't that just make him better/smarter/stronger/cooler???
  2. Because no amount of money or effort can "fix" it. Down syndrome is in his genetic makeup, and there is nothing we can do about it.
  3. Because this just isn't me. I have actually rewritten this sentence 3 times because I feel so guilty to put this in writing, but… I have never been "good" with people who have special needs. It makes me very uncomfortable. And now I just said that I am uncomfortable around people like my own child. How wrong is that?
  4. Because I already have an interesting life story, thank you, and I don't need another one. Yes, I know what a wonderful story we will have to tell and how Roo is going to touch so many lives, etc, etc, etc. But my adoption story (which is on my former blog and which I may eventually retell/import/turn into a book that no one would actually believe) will suffice for me, and Roo could find other ways to touch people.
  5. Because "How are you?" shouldn't be such a complicated question to answer. Do you mean right this moment or overall? Do you mean how am I doing with Roo's diagnosis or aside from it? Or maybe you're just being polite, in which case I still don't really know what to say.
  6. Because this one tiny little chromosome screws up every single area of life. He starts physical therapy this week—before his 4-month "birthday"—and occupational therapy next week. He has 2 holes in his heart. His right tear duct is clogged. Even his TEETH are likely to come in at different times and in a different order from other children's. NOTHING IS NORMAL.
  7. Because everyone else gets to go home. We have had tremendous support from friends and family. But the bottom line is, no matter how much someone cares for us or cries with us or helps us… at the end of the day, that person gets to go home and go back to their "normal" life.
  8. Because this is not the "summer before kindergarten" that I had planned to spend with Lamb. I wanted to do so many fun things—all of the things I thought we'd have tons of time to do over the last 5 years but never got around to doing—and I've been in such a daze that we have done almost nothing.
  9. Because we have enough other stuff to deal with right now.  There are other things going on right now, relationship issues that are breaking my heart, work issues that are stressing me out, childrearing issues that make me want to pull out my hair.  You'd think that a major thing like this might help to put it all into perspective, but it just makes everything seem magnified about 100 times.
  10. Because every emotion I have is accompanied by guilt. When I feel sad, I feel guilty because I don't want the big kids to think that I am sad BECAUSE of Roo. When I am angry, I feel guilty if I take it out on someone who doesn't deserve it. When I am happy, well then I feel especially guilty because it seems just plain wrong to be happy in the face of what Roo and the rest of us are dealing with right now. How can we ever be happy again?
  11. Because other people have a lot more kids than we do without having Down syndrome—or any other "syndrome"—come into their lives. Yes, I know it is shallow and borderline mean to say it, but I'm emotional and venting so you'll just have to forgive me because I'm going to say it anyway. Why couldn't this just happen to someone else?
  12. Because everyone keeps telling me what a "special" journey we're embarking on and all I want is the same normal road everyone else gets to travel.
And yes, I know it was supposed to be 10, but life is just so unfair right now that my "top 10" list has grown to 12 items.

So that's my angry rant for tonight, friends. I apologize for sounding bitter, but I started this blog in part so that I could share all of this with you—the good, the bad, and the ugly. Tonight's an ugly night. But even in the middle of all of my anger and hurt, a Bible verse keeps echoing in my head—one that I learned shortly before all of this drama with Roo started.

"Why are you downcast, O my soul?
Why so disturbed in me?
Put your hope in God,
for I will yet praise him,
my Savior and my God." --Psalm 42:11

I will yet praise him. I will still praise him. Even though life sucks right now. Even though I don't know what tomorrow will bring. Even though my emotions may vary "from minute to minute", as I have started saying a lot. I will yet praise him.

Sunday, July 25, 2010

My Love/Hate Relationship with Early Intervention

Good morning. I know I've been strangely absent for the last few days. It's all because of one silly little post on Facebook this week—I made the mistake of saying that I had a "low-key week" planned. It was all downhill from there! No, downhill isn't really the right word. It just got a lot busier than I had expected to be.

And most of it was "good" busy. On Thursday we hosted what was quite possibly the best play date ever. J This summer we installed a big play set with swings, slides, a rock climbing wall—all sorts of fun—as well as 2 concrete patios. Since we have this new fun stuff, we love to have people over, and I need some good distractions these days, I decided to put our back yard to use. I invited just about all the moms I could think of to bring their kids over for a big fun morning. We ended up with around 15 moms and 30 or so kids having a fabulous time playing, talking, and feasting on PB&J. It was a great success, and definitely something that I want to do again. One friend stayed for a little one-on-one play date in the afternoon, and that night I had book club at my house. Yes, it was busy, but it was such a fun fun fun day.

Another appointment on my calendar this week was Early Intervention. A month ago I didn't even know what Early Intervention was—it conjurs up images of a group of people sitting down with my infant to tell him that they love him but he needs to stop sneaking whiskey into his bottles. In actuality, Early Intervention services are "specialized health, education, and therapeutic services designed to meet the needs of infants and toddlers… with developmental delays or disabilities." That makes more sense, since my child has Down syndrome and not a drug/alcohol problem… but still, kinda scary sounding.

Fortunately, we have a great facility nearby, so Roo and I headed over there this week. I wasn't really sure what to expect. I knew that he would be evaluated by 3 therapists—physical, occupational, and speech—and that my early intervention specialist and my Help Me Grow service coordinator would be there as well. If someone had pressed me on what I thought the appointment would be like, I would have said that we would be in a room similar to a doctor's office, they would lay Roo on the table, and the therapists (who would be very business-like and cool—not overly friendly) would look him over (somewhat disdainfully) one at a time and tell me all the things that are wrong with him. It was quite intimidating in my head.

In reality, it was a very positive experience. We went into their "infant room", which is basically like a church nursery—a classroom with baby toys everywhere and a few rocking chairs, and we all sat on the floor. They gave me a blanket to lay Roo on, and we just sat and talked. And they played with Roo. And they fussed over him. And they laughed when he gave them a big smile. And they told him how cute he is. And they passed him around and gave him lots of attention. And they told me how cute and sweet he is. Nothing at all like the image in my head.

At the end of the appointment, they each gave me their recommendations for treatment and a few ideas of what I can be doing at home with him now. I am happy to say that his communication skills are right where they need to be, and he's actually doing a few things that are in the 6-8 month range. (For those of you who know my family, you know that we don't make quiet children. Disability or not, apparently.) The physical therapist and occupational therapist both wanted to start treatment for him right away—not because he's so far behind, but because he does have a few delays, and the earlier we get started on them the better off we'll be in the long run. At the end of the appointment, the speech therapist asked me to stop by her office, where she showed me a picture of her 18-year-old son. He also has Down syndrome. In the picture, he's kayaking. It was unbelievably sweet. She wanted to encourage me, to let me know that she's been where I am, and that it's a special ride. She doesn't know if she'll be the therapist who works with Roo if/when he needs speech therapy (since he's sooooo advanced in that area now ;-) ), but she gave me her card and told me to call her any time I need to talk parent-to-parent. I was so thankful.

And really, that's how I felt for most of the appointment—thankful. I am very thankful that early intervention exists. That no one is asking us to put our child in some institution somewhere or telling us that he won't ever be able to do anything. I'm thankful for the opportunities for growth and development, for the chance to get started on therapy right away. I'm thankful that we have such a great facility close by—and that they will actually be coming to our house for all of Roo's appointments. It is overall a very good thing.

But can I tell you something? There's a part of me that hates it, too. I hate that we need it. I pulled into the parking lot for our appointment, and their toddler playgroup was just ending. Three little boys were walking out and I thought, "That is going to be us." We are going to be that family. Other moms are going to send their "normal" children to preschool with my child so that their children can "help" him and so that my child can learn from them and grow. They are going to have pity compassion on us, on him. We walked in and met another family with a 2-year-old boy who has Down's… and I saw my son in 2 years. When Roo was first diagnosed, I couldn't believe that he had Down's partly because he didn't look like he had it. As he's filling out, though, I can see it in him more. And this little boy that we saw… Roo looked just like him.

I love it, and I hate it. I'm thankful for it, and I don't want it. Something tells me that I will eventually feel that way about the Down syndrome itself. Right now only the 2nd half of each of those statements hold true.

Roo starts physical therapy this week. He'll have that once a month and occupational therapy once a month. We'll also have another appointment once a month with just the early intervention specialist, and a fourth appointment with our Help Me Grow service coordinator. Our dance card is getting pretty full already.
But for now, I am going to snuggle this little baby who is sleeping on my chest, then I'm going to drag myself into the shower and get my family ready for church. I love going to church. I am so thankful for our church, our ABF (our class—kind of like Sunday School for grownups), our pastors, our God. J And then we're going to spend the evening swimming and eating with our friends. I am thankful for our friends.

OK, now that I have counted some of my blessings and I'm in a happier place, it's time to get started on my day.

Monday, July 19, 2010

Where we stand

So at this point, I think I'll stop the chronological telling of Roo's story, and just start to fill you in a little differently. It's been about a month since his initial diagnosis, and there is still lots to tell, but I think I'll break it up a little differently. Today I'm going to focus on what's been happening with him medically over the last month, primarily because I can't handle talking about anything emotional today.

First, if you are like me, you may kind of sort of know what Down syndrome is, but you don't really remember because you never figured you would need to know. So let me give you the quick explanation. Most of us are born with 23 pairs of chromosomes, half from our mother and half from our father. Down syndrome is typically caused by an extra 21st chromosome, which is why it is also sometimes called Trisomy-21. The physical characteristics are often recognizable, but can vary from person-to-person, both in what characteristics they have and in their degree. In Roo, he has low muscle tone, the Simean crease that I mentioned before, small folds at the inner corners of his eyes, and his eyes go up slightly at the outer corners.

A diagnosis of Down's requires a blood test called a karyotype. In this test, a blood sample is taken and then all of the chromosomes are lined up in pairs from biggest to smallest. I won't lie to you, I've seen pictures and it's pretty darn cool. I can't believe we have the technology to do that. This test is, as you can imagine, a bit complex, so it takes a couple of weeks to get the results. A quicker test, called the FISH test, can be run to give a preliminary diagnosis. For some complicated reasons, this is not considered to be quite as reliable, but it is a good starting point. Basically, if it shows that a child has Down syndrome, it's pretty much accurate—but if it comes back negative, there's a chance it could be a slightly different type of Down's that doesn't "show up" with the FISH. The FISH is quicker, but still takes a few days. (Before I go on, please know that this is not an official medical explanation. This is my dumbed-down understanding and the best way I can explain it to family and friends.)

So Roo had blood drawn for both the karyotype and the FISH. The doctor also wanted to run a CBC (Complete Blood Count) and to check his thyroid. (It is very common for people with Down's to have thyroid problems.) The CBC was run because the doctor had Roo's chart from his stay at Children's, but not the follow-up work we'd had done after he'd been discharged, and he was very concerned about Roo's H&H levels. As he explained it to us, most infants have an H&H level in the low 50s, and anything over 60 was very concerning. Roo's H&H level while he was in Children's was 74. And that was after it had started to come down. It had never been explained to us that way, and I was actually kind of glad, because that is just plain scary.

Anyway, his thyroid and CBC, as well as all of the other basic tests that they ran, came back normal, and we were very thankful for that. And then we waited for the results of the other tests, the "real" ones, the ones we wished hadn't needed to be run.

When we left the specialist's office that first day, he'd been so confident of his diagnosis that it left no doubt in our minds that Roo did indeed have Down's. As the days passed, though, I found myself explaining it all away. The crease was obviously inherited from his daddy, the low muscle tone was a result of him being "preemie-like", and I couldn't even SEE the little folds that the doctor was talking about on Roo's eyes… etc, etc, etc. I could justify everything. Surely the doctor was wrong—my baby did not have Down syndrome. God hadn't made me to be a "special needs mom"—that's not who I am, so that's obviously not who my baby is.

The following Monday, almost a week after the initial appointment, I got a call from the genetic counselor. The FISH test had come back positive for Down's. It wasn't quite as much of a blow this time as it had been that first day in the doctor's office… but it was far from easy.

About 10 days after that, we were back in the specialist's office to get the results of the karyotype. (Yes, I know, I have kind of skipped over all of the feelings and adjustments and so on… remember, I can't handle that today. I'll be emotional and vulnerable and transparent and all that with you another day.  For now let's just get caught up on what's happening, 'k?) It was a rather bizarre experience because the genetic counselor had called us to schedule the appointment because the tests were in, and again that morning had specifically said that the tests were in and the doctor would go over them with us… and then one of the first things the doctor said when he came in was, "Well, we don't have the results from the lab work yet." Ummmmmm… what??? Why exactly are we here, then? I'm still to this day a little confused about exactly what happened and why we didn't get at least part of the results that day; but basically the doctor told us that another of Roo's chromosomes looked "funny" during the karyotype and they would have to run more tests to look into the possibility of another chromosomal abnormality. Ugh. I asked the doctor for more specific information about this other chromosome, but he remained pretty vague throughout the conversation. To be honest, he didn't seem overly concerned about it—I think it would be so very rare to have two completely separate chromosome problems in one child that he doesn't really think it's a high probability. He did say that sometimes families can have a specific chromosome that looks "different" than other people's but doesn't really affect anything—just an inherited trait.

Still, when I got home that afternoon, I did some digging of my own. I searched online, and I called my sister-in-law, who has her Ph.D. in… well… something complicated but that I typically describe as neurobiology (Sorry, Mary, I know that doesn't do justice to your actual title…!) and who is doing some work at the Cleveland Clinic this summer. She talked to a friend there in genetics, and between her info and my own research, I pulled together some information on the implications of a problem with chromosome 15 (the "new" chromosome they are investigating in Roo). I won't lie to you, friends, the possibilities are scary. But they are very rare… so who knows. "Rare" does not mean "impossible"… but we'll see.
Yes, I said "we'll see", as in, we don't know the results yet. I am hoping to hear from the geneticist's office this week, but even then they will just call to tell us the results are in and ask us to set an appointment—we won't get to hear the actual results until we're in the office.

In the meantime, Roo had an echocardiogram last week. This is standard for all children diagnosed with Down's, as 40-60% of people with Down syndrome have a heart defect. The geneticist and genetic counselor both told us that they would likely have noticed something different about Roo's heart from a standard checkup if there were a problem, but asked us to have the echo done anyway. We made the appointment, and again made the mistake of truly thinking that nothing was wrong, that we were just ruling something out. We have GOT to stop doing that. Roo has 2 holes in his heart. One is small and has almost closed itself up. The other is a medium-size hole, too large to close on its own. Fortunately, it does not cause any problems for him now—he can function normally with it all through childhood. However, it would cause problems for him as an adult, so in a few years (probably when he's around 5) they will patch it. They do not have to go in surgically to patch it, though; they can insert a catheter and patch it that way. So… I guess as far as heart defects go, that's the one to have, eh? In the meantime, we'll be following up with a cardiologist in about a month for another exam of his heart, and probably once a year after that.

The heart defect is… truly not the end of the world. Jon and I didn't even cry when they told us. As I told the ultrasound tech when she asked if we were OK, "We just take it one hit at a time." And again, it is something treatable, with a nearly 100% success rate for the procedure. But it is just one more hit. I realized after the appointment that I had believed that there wasn't a heart problem because… well, because part of me still doesn't believe that he even has Down syndrome. If everything else is OK, maybe they're wrong about the Down's. Maybe the FISH test gave a false positive. Maybe the lab just messed up his lab work and needed to double-check. Maybe he's just behind because of his problems at birth. Maybe this is all a bad dream.

But it's not a dream, it's life. It's our life. And that's where we are now, waiting for confirmation on the Down syndrome, waiting and hoping to hear that there is not a problem with chromosome 15, waiting to meet with the cardiologist again. Waiting for it to get easier.

Saturday, July 17, 2010

Kanga & Little Roo, the rest of the story… kind of…

Not that I have put a lot of thought into how people react to bad news, but I didn't expect my reaction to be quite what it was. I didn't have one huge breakdown right when the doctor told us. I really did work to hold it together while he was in the room so that I could try to listen to what he was saying. I had breakdown number 1 when he left the room to write the orders for the bloodwork that Roo needed. Breakdown number 2 occurred when we got to the lab, which was just on a different floor of the same building. Breakdown number 3 happened while the nurses were trying to draw blood from our now 8 ½ pound child. Breakdown number 4 was outside the lab, while I was trying to feed him before putting him back into the car seat. I think you get the idea. I would sob and cry and mourn… and then get it together… and then a few minutes later I'd be back to square one.

Through it all, I remember that I kept thinking over and over and over, "This isn't happening only to me." My wonderful husband had been such a rock for me through everything with Roo, from all the ups and downs of the pregnancy to the week we spent at Children's to the overall adjustment to life with three kids, and I think at times I took for granted that all of those hard times were just as hard for him as they were for me. So as broken as I was, I kept trying to be very conscientious about listening to him and supporting him. Not that either of us had much to say at that particular point.

We got in the van to head home and I said, "Well, our lives just changed." It was such a dumb thing to say, but it pretty much summed it up.

Children's Hospital is only a few minutes from our church, and at that point church seemed like the best place to be. We drove straight there, and we didn't really see or talk to anyone—we just wanted to sit there and pray, and that's exactly what we did. I don't even know anymore what we prayed, but we were lost and just needed God to hear us.

When we left there, we really didn't know what to do. We weren't hungry but needed to eat. We didn't want to have to tell anyone but needed our families to know. Really we just wanted to go back to 9 AM that morning when we didn't have a care in the world. But since that wasn't an option… we went to Arby's. We didn't want to get home and have to worry about getting lunch ready while we were trying to explain to our parents what was happening, so we thought we'd just get that step out of the way.

On the ride home, we tried to figure out how we were going to break the news to our parents. Jon's mom was at work (She works for him, and their office is only about 5 minutes from our house.), my dad was at our house, and my mom was either still in her meeting or at our house with my dad (or somewhere in between). We drove past the office and his mom's car wasn't there, so we decided that the "ideal" situation (as ideal as it could be at that point) would be if his mom and both of my parents were already at our house waiting for us.

Unfortunately, when we got home, neither of our moms were there yet. We sat in the van and tried to figure out what to do. Jon called his mom and asked her to come to the house—she was still in her car on her way back from a meeting, so she came straight there. And while we were sitting there trying to plan the next step, my mom pulled in. Whew—we finally had everyone under one roof. Unfortunately, that was the easy part.

Our moms and I got lunch for the big kids, and then we sat down to break the news. It was, of course, a shock to them as well. I think we had all expected that we wouldn't really have any news until after the bloodwork came back, and even then we all thought it was just going to be fine. Coming home with a diagnosis, and a life-changing one at that, was not on anyone's radar.

They stayed and talked for a while, although I can't tell you much of anything about the conversation. When they left, Jon said, "It didn't seem like they cried that much. I expected them to take it harder." I told him that I suspected they were just trying to be strong so that they could support us. I later found out that they left our house, drove straight to McDonald's (about a mile away) and sat and cried together there.

After that we began the process of telling people. Jon called his dad, I called my brothers and a couple of close friends. We just made a few phone calls that first day, because we weren't really sure how to handle it. The idea of saying it over and over and over again was almost sickening, but doing something like sending a mass e-mail seemed tacky. And we struggled with how many people to actually "notify" instead of just letting them find out from others or whenever we saw them next.

Later that afternoon, we took the kids and bought the vegetables for our 2nd annual garden. It was a strange juxtaposition of doing something fun when it seemed like nothing would ever be fun again. I think, though, that Jon really needed to just do something "normal" as a family, so that's what we did. As we got in the van to go home, Jon said, "I'm tired and hungry and sad." And Lamb said, "Why are you sad?" So far we hadn't said anything to the kids about Roo's diagnosis. We stumbled through an explanation, and unfortunately in our stumbling, we told the kids that Roo would be "a little bit sick" throughout his life. Wrong choice of words. Although she seemed to accept it at the time, at bedtime that night, Lamb sobbed and sobbed because she didn't want Roo to be sick. We backpedaled the best we could and explained that he would just be a little bit different from her and Monkey, that it would take him longer to learn to do things, etc, etc. And even as we tried to reassure and comfort our daughter, our words sounded hollow. I didn't want it either.

Wednesday, July 14, 2010

A Day in the Life

So let's take a break from all of the… hardness, for lack of a better word, and have a little smile. My kids have been cracking me up today, and I thought I would share some our laughs with you…

At lunch
Monkey: "Mommy, this cucumber tastes funny. Do I have to eat it?"
Me: "That's a potato."
Monkey: "Oh, OK then." (Eats said "cucumber")

In the backyard this afternoon
Lamb: "Mommy, GUESS WHAT! I just saw a REAL LIVE SQUIRREL!!!! Or maybe it was a skunk. I don't know. But I didn't smell anything."

Leaving a friend's house this evening (The kids stayed in the van while I ran in.)
Lamb: "What did you bring out with you?"
Me: "A birthday present that Miss Stacy got for me. Wasn't that nice?"
Lamb: "What is it?"
Me: "An angel."
Lamb: "Can I have it?"

At dinner
Lamb (holding a mushroom from a piece of pizza): "This tastes like a lightning bug."
I don't even want to know why she knows how a lightning bug tastes.

Also at dinner
Me: "Monkey, please quit using your fingers and use your fork."
Monkey (looking all over the table): "Where is my fork?"
Me: "In your other hand."

Just a few minutes ago
Me: "I need a few minutes to myself, please."
Lamb: "Why? Are you going to pray about your attitude?"

Yes, they drive me to the brink of insanity and then bring me back with laughter.

Tuesday, July 13, 2010

Kanga & Little Roo, bringing you up to speed

This is it, friends. This is the post that will bring you to our current state. In some ways I am excited to have us all on the same page, in other ways I feel almost sick to my stomach to type it out and see it in black and white. But for better or worse, here's what came next…

At this point in Roo's life, we had almost come to expect complications. Neither my husband nor I batted an eye when our pediatrician told us that she had some "concerns" at his 2-month check-up. We simply listened as she explained a few things she had noticed—an unbroken crease across the palm of his hand (I know that you are checking the palm of your hand now. Most of us have 2 long creases across our palms, but neither of them goes straight across the entire length. He has a single long crease the entire length of his right hand.), an arched palette, and just something different about the set of his eyes. Still, she didn't seem overly concerned. In fact, my husband and Lamb both have the same crease (called a Simean crease) on one of their hands, so it seemed like no big deal. She just wanted us to see a geneticist to rule out the possibility of a bigger issue. She didn't even give us a specific thing she was looking for—she simply said she would feel better if we had some genetic testing done on Roo. She explained that they would just do a blood test, and that it might take "a while" to get the results, and she could just go over them with us at his 4-month visit. I was actually more concerned with the fact that she insisted on treating Roo as a "normal" infant instead of adjusting his growth chart to one they would use for a preemie. She explained—and I did understand—that it was difficult to know how far back to adjust, since he wasn't really a preemie. But it seemed to me that we should be able to look at his size and level of development at birth and make an educated guess as to where he would fall. I made it my mission to investigate where he seemed to "fit in" on the preemie scale.

I went home and called the number at Children's Hospital that day. We were able to get in exactly one week later. It was a little scary, but honestly we weren't that worried. We decided to keep the appointment rather quiet—we told only our parents and a couple of close friends. We really couldn't see that anything could come of the appointment, and we didn't want to worry anyone needlessly. In the meantime, I determined in my own head that he seemed to be about a 32-week preemie. His birth size and current size both fell right into the 50th percentile for that timeframe, as well as his development level at birth and his current "milestones." It was far from an official medical determination, but I thought it would help me in my own head if I could have an idea of how to "adjust" his development—the doctor at Children's (the week that we were there after he was born) had told me that he may track like a preemie, and it seemed like he was doing so. No big deal.

I didn't think too much about Roo's appointment until the night before we were scheduled to go in. The geneticist's office had sent us some paperwork to bring with us to the appointment, and I had yet to fill it out. It was overwhelming to sort through not only Roo's medical history, but mine and my husband's as well. I am adopted, and while I now know both of my biological parents, I have often been frustrated with having limited knowledge of my own family medical history. I have struggled in the past with worrying about what I might unwittingly pass on to my children, and it was all coming back as I tried to fill out a family tree for the doctor's office. I didn't even know what exactly the geneticist would be looking for, but the idea that whatever "it" might be could be inherited made me sick to my stomach.

On the day of the appointment with the geneticist, my dad came over to watch the big kids. My mom, who had just retired from her job in the school district, had one last meeting that morning and would come over to join my dad when she was done. We actually thought it might be a very short appointment—go in, get a cursory exam of Roo, get some blood drawn, go home and wait. In fact, when we got to the office we parked at a meter—we didn't have very much change on us, but thought it would be fine because surely we wouldn't be there very long.

In some ways I feel like that appointment will be forever etched on my mind, and in others it seems like a blur. We saw a nurse first who ran through the basics that you do at pretty much any doctor's appointment for a small child—height, weight, eating & sleeping habits, milestones reached (a pretty short list at 2 months of age), etc. Then a genetic counselor came in, and she explained what the doctor would be doing that day, and again asked us about Roo and what kinds of things he was doing so far. We were happy and upbeat, chatting with the nurse and counselor, truly not worried about anything that might happen that morning. We had already been there longer than we had anticipated, though, so while we waited for the doctor to come in, my husband got change from the receptionist and went down to feed the parking meter.

Finally we met the doctor. He was very knowledgeable about Roo and his history—it was obvious that he had sought out and reviewed Roo's charts, including everything from his stay at Children's when he was first born. We were impressed. He began his examination of Roo, and reiterated the "quirks" that our pediatrician had noticed at his 2-month appointment. When he mentioned the Simean crease, my husband immediately showed the doctor his palm with the same characteristic. "Yes," the doctor quickly agreed, "it definitely can just be a family trait." We nodded and smiled, waiting for him to say that everything was fine, or maybe that he didn't suspect any problems but wanted to run some blood tests just to rule out any problems. Instead he said, "But it can also be an indicator of Down syndrome, which is the case here."

There are no words to describe what happened in my head at that moment. It was truly like I had been hit by a truck. I had not seen that coming, not in a million years. I could not grasp what he had just said. Did he really just say that the baby—MY baby, MY ROO—had Down syndrome? It was surreal. It wasn't possible. He'd said it so matter-of-factly. Like he was telling us, "This is a boy." Like it was so obvious that he shouldn't even have to say it. Down syndrome.

And then it was like my brain split into two parts—the part that was trying to keep it together so that I could listen and be aware of what was happening, and the part that was shutting down and refusing to hear anything more. He explained that we would have to take Roo to the lab and get some bloodwork done, but he also explained that this would simply serve to confirm his diagnosis and that he was "fairly certain" of the diagnosis based on his examination.

I don't know what else to tell you about that appointment, because the rest is truly just all one jumbled mess in my head. He did say that Roo's symptoms are quite subtle, but also expressed surprise that no one had come up with the diagnosis before—especially during his stay at Children's, when (this doctor felt) they probably should have done some genetic testing just to try to understand his other problems a little better. And then we saw the counselor again, who gave us a book called Babies with Down Syndrome and encouraged us to take things at our own pace—the book was there whenever we were ready to start it, but not to feel pressure to sit down and read it cover-to-cover. On the front was a picture of a sweet little boy, maybe 2 or 3 years old, who obviously has Down syndrome. I immediately turned it facedown. "That is not my baby," I cried in my head. I couldn't even begin to imagine my little boy looking like that, and at the same time I felt an intense guilt for being so shallow and vain. But it truly wasn't the face—that little boy was absolutely as cute as can be—it was what it represented. A different child. A different life. This was not what I signed up for. This was not my reality.

Yes, there's more to tell, so maybe I should have titled this post a little differently. But this is really "it", what this story has been building up to. I'll post more soon.

Presents all around!

It's official, friends. I am IN MY THIRTIES. When did this happen??? Even last year, when I turned the big 3-0, it didn't feel too bad. But now I can no longer say, "I just turned 30." No, now I am a 30something. Oy. Yep, you guessed it, today is my birthday. J

It DOES feel weird to be in my 30s, but to be honest, I don't really care. I like birthdays, even my own. J And today has been a fantastic birthday so far.

This morning my hubby and I got up and ready for the day, but before he left for work, he insisted on waking up checking on Lamb & Monkey. So even though they were up until 10 PM last night (Lamb decided that she needed to get me a birthday present just from her, so Daddy took the two big kids shopping while Roo and I attended a Pampered Chef party.), they were both out of bed at 6:50 this morning. Can I tell just tell you… I think I probably need to work on my attitude a bit. I was less than appreciative of my loss of "me time" this morning, even though it probably wouldn't have happened anyway because Lamb could be out until 3 in the morning and still be up by 7 AM. (OK, I might be exaggerating a bit since we've never actually kept her out until 3 AM, but I really think she would still be up before 8 for sure.) So while I was up in my room, sorting laundry and grumbling to myself thinking about the day ahead, Hubby and the kids went downstairs and made a little treasure hunt for me.

Monkey came upstairs, absolutely beside himself with excitement. He said, "Mommy, we're aaaaaaaaaaaaaaaaaaaall ready downstairs. Follow me." I went down with him and found my whole family and my mother-in-law sitting there with big smiles. They had hidden my presents, and it was my job to find them. Fortunately, Monkey gets so excited that he just can't contain himself, so he pretty much "found" all of my presents and brought them to me. J Each of the kids had gotten me something—a beautiful orchid from Lamb, and a book on landscape design that I had been wanting from Monkey. (I'll have to tell you sometime about my sudden love for gardening.) And from my wonderful hubby, I got a Bose speaker system that connects to my iPod or my laptop—YAY!!!!! I spend most of my waking hours listening to iTunes through my crummy laptop speakers, so I am very VERY VERY excited to have good speakers now! AND they are portable with a carrying case, so we can take them on trips, etc. They even have an 8-hour battery life, so I can take them outside or… well, pretty much anywhere! YAY!

Then my mother-in-law volunteered to stay with the kiddos so that Hubby & I could go have breakfast, so we made a quick trip to Cracker Barrel for an hour or so to ourselves. I spent the rest of the morning running errands. This is the only low point in my day so far… I made a 30-minute drive to return some maternity clothes I had borrowed, only to get there and find that the bin of clothes was not in my van! Grrrrr. Fortunately, I had rented a couple of movies for the kids before we drove out there, and I told my kids that they could watch a movie in the car while we ran errands, so they were perfectly happy. We finished our other errands just in time to meet my husband, mother-in-law, and parents at a local Mexican restaurant for lunch. And my wonderful parents gave me my present—a Wii Fit! Yay—time to work off the baby weight… and the stress weight…

And of course, I have to give a shout out to good old Facebook. I have been inundated with birthday messages, and let me tell you, it feels GOOD. Happy. Birthday. To. Me.

And now, it is time for me to GIVE a present on my birthday. My big kids picked a number, and that number was 12. So the winner of my first ever blog giveaway is Monica Lappe! J Monica will be receiving a Starbucks gift card or Glee album, whichever she prefers. J Congrats, Monica!

Well, since no one informed the laundry that it's my birthday, it looks like I have some folding to do. After that, though, I plan to take the rest of the afternoon "off" (until my kids are up from their much-needed-and-hopefully-long naps) and do some writing, so hopefully you will have a nice big post about Roo tomorrow.

Have a great Katy's Birthday! ;-)

Monday, July 12, 2010

Post-Weekend Catching Up

Hey friends.  I hope you all had a wonderful weekend.  We had lots of family fun over the past few days, including a river cruise on a pontoon boat, planting bunches of flowers for my mother-in-law (Yes, I do realize that it is late in the season, but it's a long story.), and just lots of much-needed togetherness.

I just wanted to let you all know that I am working on the next installment of Roo's story.  This one just seems to be one of the harder pieces I've had to write--combine that with the fact that I have had about 15 minutes of downtime in the past 3 days, and... well, it's not ready quite yet!  Be patient, though, it's coming soon!

And of course, don't forget to comment on my Spreading Kindness post for your chance to win a Starbucks gift card or a "Glee" CD!!!  I cannot even begin to tell you how much I am enjoying reading the kindness that has been shared with you all or that you have passed along to others.  It has truly blessed me!  You have until midnight tonight to enter, and I will be announcing a winner tomorrow morning, as soon as Lamb is up and picks a number for me.  :-)

Have a great afternoon.  Talk to you soon.

Friday, July 9, 2010

Spreading Kindness

So today I've been thinking a lot about kindness--mainly about how much kindness we have received in the past three months since Roo was born, and especially in the last few weeks.  (Be patient, I'm working on the next installment of the story, I promise.)  I cannot tell you how much I have been blessed and overwhelmed by the acts of love we have witnessed.  Here are just a few that are on my mind today...
  • Two wonderful friends who took me out for manicures & pedicures and lunch yesterday
  • Another great friend who watched "Eclipse" with me last night, cried with me at dinner, and then helped me to laugh and think about other things
  • My Supper-Swap Girls who brought dinner to my family 3 nights a week for an entire MONTH when I couldn't get it together to participate in the swap
  • A sorority sister who sent a card to us at Children's--even though we hadn't been that close in college, her son spent a lot of time at Children's as an infant and she knew what it felt like
Those are only a sampling of the outporing of support we've gotten.  It is truly amazing to me.  And so now I want to spread a little kindness of my own.  I am doing my first ever BLOG GIVEAWAY!  The winner will get their choice of a $10 Starbucks gift card or Glee: The Music, Volume 1.  Why that CD?  Well, because "glee" (the word, not the TV show) sort of makes me think of kindness, and becauses that's MY favorite of the Glee albums.  :-)

"So HOW do we win this AWESOME prize?", you might ask. 

"Well," I might answer, "here's how.  Simply post a comment on this point, telling me about an act of kindess that you have done OR that has been done for you."  And yes, I mean YOU.  You, my friends and family from real life who are reading this.  You, my FB friends who I haven't seen in ages.  You, the person I have never met but reads my blog.  You, the person who heard about this blog and/or giveaway from a friend.  You, the person who stumbled here completely by accident.  I want YOU to post a comment and enter to win this prize.  Because thinking about acts of kindess is helping me get through the day today, and I want to hear as many of them as I can.  So really, just your posting an act of kindess IS an act of kindess.  Crazy, isn't it?

So let's hear 'em.  (The winner will be chosen at random, by the way, using a highly sophisticated method of asking my 5-year-old to pick a number between 1 and however many comments I have...)

PS - This contest is open until midnight on Monday, July 12.

Thursday, July 8, 2010

Not that you asked...

...but I finally got to see "Eclipse" tonight, and I am sooooooooooo team Jacob.

That will be all for tonight.  Thank you for your attention.

Kanga & Little Roo, part 9

We're getting close, friends. Before you know it, we'll be all caught up on the story and I can just post, you know, about life and stuff. It actually makes me a little nervous—I do better with a purpose. But posting about life, especially life right now, is why I started this blog in the first place. So come for the story, stay for the journey.

But I'm getting ahead of myself. Let's get back to business here.

First of all, I forgot to mention in my last post, when the attending physician at Children's was discharging us, she told us to expect Roo to "track" like a preemie. She said that even though he wasn't gestationally a preemie, his size and the issues that he'd had were very typical of a preemie, and he may continue to develop that way. She encouraged us to get in touch with Help Me Grow, because he may have some developmental delays—again, those typical of a preemie. Fortunately, I was already connected with Help Me Grow. Long story short, I had gotten in touch with them when Lamb was just a baby because I had heard good things about the Parents as Teachers curriculum that they utilize, so I have had a Help Me Grow service coordinator (who is fabulous) for 5 years now.

Anyway, we followed up with our pediatrician on Monday morning. Let me tell you something. I love our pediatrician. We started going to her when Monkey was born, after a huge battle with our old pediatrician's office. She is great, she is very personable and is always "up" on what's happening with our kids, and we have similar approaches to parenting, medical treatments, etc. But on this particular day, I was quite frustrated with her. Before we left Children's on Friday, our doctor there called our pediatrician and explained that we needed a follow-up appointment on Monday, including another round of bloodwork to make sure that the levels were still coming down. She then asked our pediatrician, "Do you want me to have them follow-up with you on Monday, or should I have them come here?" My pediatrician asked that we come to her office instead of going back to the hospital. So I loaded up the three kids and headed over—yep, just me! I don't remember exactly why I ended up taking everyone by myself, but it was crazy. She checked Roo out, we chatted about our hospital stay a bit, Roo's growth, etc. Then she said, "Well, I'm not sure if we'll be able to do the bloodwork here because we can only do heel sticks, and I'm afraid that will mess up the sample." Seriously?!?! She specifically asked that we come to her—knowing that we needed this blood draw—instead of going to the hospital where they have all of the facilities that we need, and now she's telling us we're going to have to make another appointment somewhere else on that same day??? I was not a happy camper.

They did a heel stick there with the hope that it would be sufficient, and we went home. And about 30 minutes after I got my big kids down for a nap, I got a phone call that the bloodwork had come back goofy and we were going to need to take him in for another draw. Grrrrrr. Fortunately, this time my mother-in-law was able to come to my house for a while so that I could just take Roo.

We went to our local hospital this time instead of Children's. They asked me to hold him while they drew the blood, and I thought, "This is going to be a disaster." But can you believe that my sweet little boy didn't even wake up when they drew his blood??? He was so worn out and so used to being poked at that point—he didn't even flinch!

It was so close to the end of the day by then that we weren't able to get the results until the next morning. But when we did get the call, everything was good! His CBC and sodium levels had continued to decrease, and his bilirubin was still in the normal range as well. Thank you, Lord!

And finally, it felt like we could breathe. We stopped managing and started settling into life as a family of 5. Lamb and Monkey were great with Roo from the start, and I loved watching them with him. He still slept a LOT, and when he was awake he was quiet as a mouse. That little baby barely cried, and when he did it was just a single yelp. I wondered if he would always be so easy, or if we were in for some trouble when he caught up to a "regular" full-term newborn. (He's still very easy, so I didn't need to worry. J) I visited a friend with a baby just a few days younger than Roo, and he was fussy and crying, and it took me a while to remember that that is what most babies are like when they're upset. If we'd had Roo first, we would have been in for a SHOCK when we had a second baby.

In May we had Roo dedicated. We started attending a new church last summer, so neither of our other kids were dedicated there. Unlike other churches I was familiar with, our church has a separate dedication service on Sunday afternoon, after the regular service. I wasn't sure what to expect, but it was a beautiful service. There were nine kids dedicated, I think. Roo was one of two infants—the rest were between the ages of 1-3. The pastor had asked each of the fathers to write a letter to their child (unbeknownst to me), and he had the dads read their letters during the service. There wasn't a dry eye in the house, let me tell you. We were blessed to be surrounded by family and friends for that special day.

In June we took Lamb for her 5-year well-child visit to the pediatrician, and we took Roo at the same time for his 2-month visit. My husband went with us this time, and Monkey was there too—it was quite the family affair. It was chaotic, but we were just enjoying the time together and going with the flow.

And then, our pediatrician said something unexpected. We didn't know it at the time, but she was setting the stage for a whole new world for our family. "I have some concerns."

Wednesday, July 7, 2010


Today my husband had to borrow my laptop for work.  While I was blogless, I wrote three or four absolutely fabulous posts.  In my head.  And now... unfortunately, my head seems to have lost them.  So you'll just have to take my word for how great they are--er, were.

Instead, let's leave the little emotional roller coaster we've been on lately and talk about something more banal.  A little banality never hurt anybody.  I'm pretty sure that's a famous quote, isn't it?  It is now.

So for tonight, you get some random thoughts from this head of mine...
  • I'm pretty sure my 5-year-old is attempting to see if she can actually make my head explode.  For the past few days she has been pushing the limits, testing every rule and statement from my mouth.  Today she ran ahead of me as we left a neighbor's house, and I called out to her not to go on the road.  She stopped riiiiiiiiight at the edge of the driveway............ then turned and looked at me........ and put one foot on the road.  Then back on the driveway.  Then back on the road.  Seriously.  Exploding head.  It's gonna happen.
  • Tomorrow I am spending pretty much the entire day with friends.  In the morning I'm going with two girlfriends to get manis/pedis, and in the evening I'm going with another friend to see "Eclipse" (finally).  Hopefully it will relieve some of the pressure in my head.  ;-)
  • My husband, who took my laptop ALL DAY (for work... ha!), is now threatening me if I don't give it up and let him play some Spider Solitaire.  So you're just going to have to wait for another day to hear more of the brilliance that is going on in my brain.
Have a good night.  More about Roo soon.

Tuesday, July 6, 2010

Kanga & Little Roo, part 8

Once Roo's blood wasn't being drawn as often, he did start to eat a little more. But just a little. I wanted so badly to go home, and one of the nurses even mentioned that they sometimes send kids home with the feeding tube (and train the parents to use them). The attending heard this and quickly explained that she didn't see that as an option in our case. (I think it was because they typically do that for kids who need them long-term. Since this was something she expected Roo to quickly outgrow, and since we were monitoring other things as well, she wanted to just wait it out.)

The rest of Tuesday went by, then Wednesday. Like I said in my last post, I pretty much got to spend all my time holding and loving him at this point, so it wasn't all bad. I was still exhausted, though, and a little overwhelmed. I had brought my Bible and another book and a stack of thank-you notes, but they all sat untouched. I couldn't focus on anything important, so I stuck to "The Holiday" and "Grease" (which I had brought from home—so thankful for DVD players in the rooms!), and "Law & Order" when I got desperate. J

And then… on Thursday night… it happened. He drank an entire bottle. And then another. And another. I was so excited! I set my alarm in the night and refused to let the nurses feed him—I wanted to do everything possible to make sure he took his whole bottle so that we could go HOME.

The doctor came in on Friday morning with more good news—his sodium and CBC levels were down too. It was a very slight decrease, but any decrease at all was a good sign that they were going to start to correct themselves. In fact, she cancelled all further blood tests so that Roo could just focus on eating. She said if he continued to eat well, we should be home by Saturday morning.

Hmmmmm. Don't get me wrong, I was excited that the end was in sight, but I just really had my heart set on not spending one more night sleeping on that couch. But I tried to hide my disappointment and just be excited that we were even talking about home.

And Roo continued to eat and eat and eat. It was like someone had just flipped a switch on him. During the day, he even started to wake up and act hungry when it was time to eat—a welcome relief from having to jostle him awake every time.

The doctor came back in after lunch, which was unusual. She would typically come by around 8:30 AM and again in the evening—the only time she had stopped by during the day was the day he'd had the procedure and ultrasound done. I wasn't sure what to expect, but I was ecstatic when she said, "I think we're going to get you home today." YAY!!!!!! I seriously thought about hugging her. Not only was I excited, but it felt like she and I were old friends at that point in the week. J

She went over home care and follow-up instructions with me, then a nurse did the same thing again, and the resident came in and did them again. I didn't care. They could repeat themselves all they wanted—we were going home! That was all that mattered. I met with a nutritionist about making sure Roo was getting enough calories. And finally, two nurses came in… and removed the IV port from Roo's head. Oh. my. goodness. What a sweet moment that was.

And then we were on our way!!! I stopped home for a very much-needed shower, then ran to my brother's house to pick up the other kids. And when my hubby came home from work that night, it felt SO DARN GOOD to all be home together!

OK, another short post, but it's all I have time for right now—and it's a good, happy stopping point for now, too. J I hope you all had a great weekend. Ours was quite busy and hot!!! We had lots of fun, but are now looking forward to getting things back to normal a bit.

Monday, July 5, 2010

Kanga & Little Roo, part 7

On Tuesday morning, my husband brought the big kids in for a visit. They loved seeing their baby brother, but I think they loved the big ball maze that is in the lobby almost as much. The Monkey would literally lay on the floor and watch it until we dragged him away. Yes, I know that I am a bad mom for letting him lay on the floor of a hospital, but he was so intent on figuring out exactly how it worked that I just couldn't disrupt his creative process! lol (I searched and searched for a picture of that ball maze but couldn't come up with one. It really is pretty impressive.)

After some family playtime at the hospital, I got the best gift of the week—my mom came to stay with Roo for the morning so that I could leave and spend time with the Lamb and Monkey. It was so nice to be home with them for a while! I was missing them tons, and it was exacerbated by the fact that I didn't know when Roo would be coming home.

As always, though, things with Roo just weren't that simple. I got a call from my mom that they were having trouble drawing blood again, but it was even worse than usual. This time they were going to have to draw from an artery. That doesn't sound bad, but unfortunately it is a little more involved than a standard blood draw. Roo would have to be taken to a procedure room and a doctor would be called in to get the blood. They were taking him right away to get it done.

And of course, there was more. His sodium levels were still high, which indicated that his kidneys were over-functioning. After the procedure, he would have an ultrasound of his kidneys to make sure that they were OK. At least that one wouldn't be painful.

I wanted so badly to enjoy my time with the older kids, but it was almost impossible to stop thinking about what was happening with Roo. I stayed with the kids until lunchtime, then asked my dad to go ahead and put them down for naps while I went back to the hospital.

The 40-minute drive from my parents' house to the hospital was the most time I'd had completely to myself since Roo was born. I had spent so much time worrying about him and doting over him and thinking about him that I hadn't let myself think about much else (like how I was feeling), but now it all came out. I sobbed, I cried out to God, I even yelled at God a little. I felt like I was being torn to pieces from the inside out. My baby was suffering—every stick to the heel, every poke to the arm brought tears to my eyes. I was terrified that there was something more that we were missing. I felt helpless, knowing that everything going on with him was out of my control. I felt guilty, knowing that he hadn't been getting what he needed in the womb, MY womb. I felt inadequate because it seemed that I was always neglecting someone—if I was at the hospital, I wasn't with Lamb & Monkey; if I was at home, I wasn't with Roo; no matter where I was, I was such a mess that I wasn't much help to my husband. And that poor man, he was doing it all—trying to run his business, coming to the hospital as much as possible, getting the big kids where they needed to be each day, etc, etc, etc. How had this happened? Just a week before I had been pregnant and we had been planning a simple tea party to celebrate Spring Break. Now we're darn near experts on jaundice and hematocrit and… hospital food. "God," I cried, "I know that You knew all this was going to happen and that You are in control… but to be honest, it's not really helping me much right now." And as I had a thousand times before, I wondered again if all these problems Roo was having were just symptoms, signs of a greater underlying issue that we were missing.

Roo had just gotten back to his room when I got there. My mom brought me up to speed on everything, then headed home to help my dad with Lamb & Monkey. The doctor (the attending) came in a few minutes later and explained everything again. The CBC (Complete Blood Count) and sodium were still high. They hadn't come down at all yet, but they weren't increasing either. For now they would continue to monitor. The kidneys—praise God—looked good. The sodium level, she said, should also fix itself with time.

So we settled in to wait and pray. Roo's levels—CBC and sodium—needed to decrease, and his eating needed to increase. Pray, pray, pray. In the meantime, the doctor had given me some good news: they were going to stop the constant blood draws. For the past two days she had told me over and over that 1-the levels just needed time to come down, and 2-that Roo needed as much rest as possible so that he would have energy to eat. But at the same time, they were drawing blood every couple of hours, waking him up and stressing him out between feedings, which made him too tired to eat. It had been very frustrating for me, although I was grateful that they were doing as much as possible to help him. Now they would just draw blood first thing in the morning, and then again in the evening. This was a huge relief to me. Huge. In fact, in some ways I started to enjoy the time at Children's for the next couple of days. OK, maybe that's overstating it a bit… but seriously, from Tuesday afternoon until the day we went home, I didn't have to do anything but hold and snuggle and love my baby. Family and friends stopped by. A pastor from our church came in to pray with us every day. I brought in some movies from home to watch. (And by the way, I learned that if you ever are stuck in a room with basic cable for hours on end, you can pretty much always find an episode of "Law & Order" on somewhere, 24 hours a day, whether it's SVU, CI, or the original. And if by some freak accident there's a time slot without an L&O, you can find a "CSI", usually "CSI: Miami".) But mainly I just loved on my little guy.

Friday, July 2, 2010

Kanga & Little Roo, part 6

Before I get back to Roo's story, let me just tell you that I have embarrassed myself a bit. I am typically known as a Grammar Nazi… but oh. my. word. Insomnia does not mix well with proofreading. I went back to read my post later and found way too many mistakes. I think I've fixed most of them, but seriously, no guarantees. Thanks for reading anyway. I hope you still love me.

Monday started off rough. Going in there and seeing poor little Roo in that isolette with the NG tube (feeding tube) and IV was awful. But his bilirubin level was improving. In fact, it was well within the normal range and most babies would have been out from under the lights at that point, but the doctors (I'm guessing because of his size) wanted to take extra precautions with him and keep him in there a little longer. Our current nurse (which changed every 8-12 hours) even told us that it probably wouldn't be a big deal if we didn't rush him right back into the isolette after we fed him………… J

And finally on Monday evening… we got to turn off the lights! YAY! They came and took away that scary-looking isolette and brought in the standard bassinette that most hospitals use for newborns. What a welcome change! Not that he was in there much—I held him every moment possible, and we had lots of visitors too.

And then more good news—they were disconnecting the IV. Wow, I was actually starting to be able to breathe again. The port would remain in his head just in case, but he would not be needing more fluids for the time being.

At this time, the doctor also reduced the amount of milk he needed to take at each feeding, but upped the number of calories. They did this by adding powdered formula to my breast milk. This allowed him to get the calories he needed without having to process quite as much milk each time. We're actually still doing that, although just with formula—the pumping didn't last long once I was home with three little kids.

His red blood cell count continued to be high, and they continued to monitor it with countless blood draws. Unfortunately, they kept trying to get the blood from his heels, which I mentioned before didn't provide accurate results because his blood was so thick, so then they would come back an hour or so later and draw from a vein. It was no easy task, finding a vein in a dehydrated 4-pound baby. It was very hard to watch, and they often had to get a team from the NICU or even the helicopter transport team to come draw blood.

One more concern came up on Monday—his sodium was a little high, and he wasn't peeing as much as they would have liked. These both pointed to possible kidney issues. They brought in a portable ultrasound machine, but had a hard time getting an accurate picture because he was so tiny. Still, he was peeing some, so they weren't overly concerned.

All-in-all, Monday went well. It was nice to get a little bit of a break and get rid of the isolette and IV. So very nice.

I know this is short, but it seems like a good stopping point. I think I'll take a little break here. Have a great 4th of July weekend, everyone. J

Thursday, July 1, 2010

Where is God?

As I wrote the title to this post, it reminded me of a little outing I had a chance to take with just the Monkey last week. It is very rare that I get time alone with him, and I am always amazed at how sweet and funny he is. As we drove down the road he said, "Mommy, God is everywhere."

"Yes, Honey, you're right," I answered.

"So He's here? Right now?"

"Yep," I said. "He's right here with us now."


"Do you think I could put on my dinosaur mask and scare Him?"

I love that boy.

God is right here, right now. I know this is true. I'll be honest, friends… I don't feel this to be true right now. But I still know it.

Part of the reason I've found the time to post every day is because I want to get you all caught up on Roo and his story, so that I can start to share what's happening now. It's been a tough couple of weeks. I know God is in them. But I don't feel Him.

I haven't opened my Bible in over two weeks. That was when we first went to the specialist's office and found out the latest news with Roo. Shortly before this appointment, our pastor had shared during a sermon that he had been struggling with journaling and praying about a tough health situation his wife was having. A counselor friend of his encouraged him, "You don't train for a marathon when you're running a marathon. You rely on the training you've already had to get you through." I think of those words often, and I have leaned heavily on them in the past two weeks.

Here's the problem: What's another word for something on which you lean heavily? Um, I believe that's called a crutch. That's what those words have become. A crutch. An excuse. Bottom line: I'm avoiding God. I sit down with my Bible and I don't know what to read. I don't necessarily want to read something that will make me feel better, because… well… to be honest, I don't want to feel better right now. I just want to lay here and let it hurt. (That's sort of an inside joke between my hubby & me. I'll tell you that story another time. Hopefully you get the gist, though.) I don't want to read Psalms of David's despair, because I have finally become numb and don't know if I want to reopen the wounds and read something that will make me cry. Sometimes I have an idea of what I want to read but don't know exactly where to find it, so I give up because I just don't have the energy to search.

Excuses. They are all excuses.

So I've been trying to figure it out tonight, why I'm really avoiding God. Is it because I'm angry with Him? I am definitely angry with the situation. Is it because I can't find Him in all this? Not exactly. I can see His purposes in our situation, but… aha. Here's the problem: I don't want to see Him in this. I don't want to run to Him for comfort because accepting His grace to get through this means accepting that He has allowed this situation to be part of our lives. And I can't accept that yet. I'm avoiding God because I can't take the comfort without accepting that it came from the same hand that is bringing the pain.

Sooooooo… why am I writing this? I don't know. I don't have any great conclusion right now, any pick-me-up revelation that occurred to me. I just have hurt. Transparency. This is where I am. I'll get past it, I know I will. But maybe just not tonight.

By the way, one day when I was in a bad mood my hubby put Monkey's dinosaur mask on me and threatened to make me wear it whenever I was grumpy. Maybe he was onto something. Do you think I can put it on and scare God?

Kanga & Little Roo, part 5

Well, friends, I've been up with insomnia tonight. How can someone who is as worn out as I am have trouble sleeping? I just don't understand it. But as I lay in bed awake, I realized that I was about to mess up the timeline in my little story here. So much happened in such a short amount of time that it's all a bit of a blur. But now I realize that all of the big stuff happened even closer together than I realized—no wonder I was so at the end of my rope!

So let me back up a minute… I did go home briefly on Sunday afternoon to shower, change, and head back to the hospital. And at that time, I really did think we might be heading home soon. But by Sunday evening we had realized that this was going to take longer than we had originally thought. At that point, I was completely overcome by exhaustion—physical, emotional, you name it. I couldn't take any more. I told my hubby that I needed just ONE good night's sleep so that I could face whatever was coming next, so I went home with him that night. It just about killed me to leave Roo there alone. He wasn't in the NICU, so it wasn't like I was leaving him in a secure place—it was just… leaving him in… a hospital room. By himself. It was scary. But I knew that I had to do it, just for the night. And really, the nurses there are great, and I know that they did keep a closer eye on him with me gone. Also, he literally slept 24 hours a day, with the exception of those 15-minute feedings—and quite honestly, he didn't really open his eyes then either.

I rode home with my husband (OK, he needs a name too. What is he? The Lion Tamer? I don't know, I'll have to think about it. All suggestions welcome. ;-) ) and basically went straight to bed. It was late, so the Lamb & Monkey were already asleep. (My mother-in-law was with them.) My good night's sleep, though, wasn't quite what I expected. I got a call from the hospital at around 4 in the morning. The nurses had determined that not all of his food was getting digested, and decided that he needed to get more fluids intravenously. They were putting in an IV. The nurse who called said they would attempt to put it in his arm, but warned me that there was a good chance it would be in his head.

It seemed like it would never end. It was always one. more. thing. I wasn't sure how much more I could take.

The next morning Jon and I took the kiddos to a friend's house for the day. Can I just stop here and tell you something good? We could probably all use it right about now. J We had a tremendous amount of support during our stay at Children's. Friends who brought food to my family so that I didn't worry about what they would have to eat at home. Friends who brought food to us at the hospital. Friends who just came to visit, who called, who sent cards, who prayed. I sent an e-mail to my moms' group at our church, and women who I hardly knew called and e-mailed, offering to watch the big kids, to bring us dinner, even to run errands for us. And of course, our families visited, helped with the kids, took us to countless lunches and dinners, even stayed with Roo to give us a break. It was amazing. I was overwhelmed daily by the love and support we were given in the midst of all that. What an absolute blessing.

One friend in particular—who knows who she is and probably won't be happy to be singled out, but I'm going to do it anyway—offered more and more of herself throughout this whole time. She was one of the first people at the hospital when Roo was born, the first friend who visited when we had to go back to Children's. She brought us dinner and desserts (and let me tell you, she is one heck of a cook!), and on this particular day, she gave up her last day of Spring Break to watch the Lamb & Monkey for us. I don't know what I would do without her. Talk about being the hands & feet of Christ!

So Jon and I took the kids to her house, then headed back to Children's. Even though we had been warned about the IV, we were not prepared to see our little baby that morning. We walked in and there he was, all four pounds of him, still in the isolette, blue lights shining down, eyes covered, but now with the tube in his nose, an IV in his head, and splints on his arms to keep him from pulling at the IV. I literally could not catch my breath. I had to keep reminding myself that it was just fluid in the IV, not some disease-fighting medicine; that the isolette was just there to keep him the right temperature while he was under the lights, not because he was sick and couldn't be touched. This would be OK. We would get through it.

That morning we met a new attending physician, the woman we would get to know well over the next week. I adored her. She was great. We also had a new resident for the rest of the week, and to be fair, she was much more professional, confident, and (to be honest) competent than the first one we'd had. Even though she still looked like a teenager. ;-)

As much as I liked and appreciated this new attending, she had more bad news for us. Roo's blood was thick—we had known that since shortly after we arrived at Children's. It made all of their blood samples difficult to get, and made it hard to get accurate information from blood taken from his heel. (They would have to squeeze his heel to get the blood out, and I guess that would squish the blood cells and throw off the results.) So far, they had blamed the thick blood on dehydration. Now, though, they saw that part of the problem was a very high red blood cell count. Very high, I would later learn. Hemoglobin and hematocrit, those were the numbers we were watching. They were the reason for the many, many, many blood draws over the next couple of days. They were the terms I would be saying in my sleep by the end of the week.

The good news was that we didn't really have to do anything about his red blood cell count at that point. They just needed to monitor it. She explained to me that all of the issues we were having—the jaundice, high hemoglobin & hematocrit, dehydration, excessive sleepiness—were very typical of preemies. And even though Roo wasn't gestationally a preemie, his size—and now these issues—indicated that maybe he had just developed that way. And in preemies with a high H&H level (hemoglobin & hematocrit), they usually just needed time, and eventually the levels would come down on their own. There were other possible treatments if they didn't, but we didn't need to worry about those just yet.

And so we continued with this new normal—me at the hospital with the baby, my hubby there as much as he could but trying to get some time in at the office (He's self-employed, so it's not like someone can just take over all his work if he's gone…), our parents and kids visiting as much as possible, my brothers stopping in when they could. It wasn't fun, but we just took one step at a time.