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."

Instead...

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.

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.

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.

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 4^th of July weekend, everyone. J

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."

Pause.

"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.