Midnight Prayers

I owe you posts about Evan's 7th birthday (his party will be this Saturday) and Ben turning 6 months old (on January 30th). Emmett celebrated his 38th birthday, too.

I can't access any pictures right now - something happened with our server at home that I do not understand. Take it from me that my kids are as cute as ever. I'll show you photographic evidence eventually.

I've been feeling really down the past few days. I'm coming down with some kind of cold or flu, I think, and it makes me tired and weepy. I look around and I see all the things that I'm not doing well - haven't shopped for groceries, haven't been reading books with the kids, haven't been stimulating Ben enough or figured out his feeding schedule, haven't been getting up early for quiet time, etc... I'm discouraged.

So tonight, when I woke up at midnight and couldn't sleep, I came down to the living room to read my Bible and pray. I'm reading through a devotional called Streams in the Desert, and - when I take the time to read it - it speaks to my heart.

In a recent reading, the author wrote about how an oak tree grows: "Yet it is in the storm that God equips us for service. When God wants an oak tree, He plants it where the storms will shake it and the rains will beat down upon it. It is in the midnight battle with the elements that the oak develops its rugged fiber and becomes the king of the forest.'"

Shortly after I read that, a friend pointed me to Isaiah 61. In Isaiah 61:3, Isaiah says that he (prophetically: Jesus) has been sent "... to provide for those who grieve in Zion - to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor."

That's what I'm praying in the middle of the night - that He would replace my spirit of despair with a garment of praise. And that in my life and in my family's life, we would display HIS splendor. I'm trusting that these times of illness and busy-ness and dreariness are just part of the rain of life, and that He is shaping me.

Rub, Pound, Squeeze, Scratch

Lately, I have been appreciating how some small pieces of childhood go with us into adulthood, and then get passed down to our children.

For example, when Emmett was little, he loved getting backrubs at bedtime. In order to speed up the process, his parents invented "Rub, Pound, Squeeze, Scratch." That way, they could do a super-quick backrub or a longer one, depending on how much time they had.

Evan and Corrie are mostly good at going to sleep ... now. But there was a long time when putting Corrie to bed was a huge chore. We were like an episode of Supernanny every night. Put her in bed, she comes out. Pick her up, no talking, put her back in bed. Repeat. Repeat. Repeat. We tried everything to get her to go to bed! Lights, no lights. Music, no music. Locking her in. It was frustrating.

Eventually, we tried "Rub, Pound, Squeeze, Scratch." I don't think it was the turning point in getting Corrie to embrace bedtime, but it did help.

Evan likes it, too. Now Emmett reads the kids a story and prays with them. I do Ben's bedtime, then visit the big kids for "Rub, Pound, Squeeze, Scratch" and a snuggle. When Ben gets older, I'm sure he'll get in on the backrub action, too.

I don't want to forget this bedtime routine. Who knows? Maybe our grandchildren will fall asleep to "Rub, Pound, Squeeze, Scratch" one day. :)

Ben update - 5 months

It's hard to believe we've had 5 months with Ben already! He's a sweetheart!

His brother and sister certainly think so. :)

Over the past month and a half, we've had several different appointments:

(1) Audiologist: Ben had to have his hearing tested. Kids with Down syndrome often have small ear canals, and they can have frequent ear infections and hearing problems. We wanted to make sure Ben was hearing OK. And he is! Passed the test in both ears!

(2) Pulmonologist: Because of Ben's heart, he qualifies for a special vaccine called Synagis. It works to prevent RSV (a respiratory illness that shows up in the winter). The only catch with this vaccine is that you have to get it once/month. Ben's had one shot, and he'll probably have 3-4 more (through the end of RSV season).

(3) Cardiologist: The hole in Ben's heart remains about the same size. He is still on two different medications; these help his body process fluid so that his heart doesn't have to work as hard. The doctor that we saw a month ago said that we would consider surgery if Ben stops gaining weight. The doctor we saw yesterday seemed to think that we might be able to wait and do a catheter procedure (much less invasive than Open Heart Surgery) in another couple of years. That sounds good to us!

Unfortunately, Ben lost 5 ounces over the past 6 weeks. He saw the pediatrician today, and we are going to start bulking up the expressed breastmilk with rice cereal. Get that boy some calories! We just started solids, so hopefully that will help him gain some weight, too.

(4) Early Intervention: He sees a speech therapist twice/month, and he'll be assessed for physical therapy soon.

Ben's current weight is 11 lbs, 15 oz. (He was up at 12.4 before Christmas!)
He's wearing size 1 diapers, but moving into size 2. And he's wearing a mix of 3 month and 3-6 month clothes.

Ben loves to play with his little activity gym. He kicks to start the music, waits very deliberately for the music to stop, then he gives it another good kick. It's fun to watch him play.

He has a huge grin. He loves to be bounced on your knee. He gets a big kick out of play time with his brother and sister.

Ben sucks his thumb. Or his two middle fingers. Or his blanket. He tries hard to get toys into his mouth, too!

He's an all star sleeper. We're working on a schedule; currently he sleeps from 9:30 p.m. - 7:30 a.m. and catnaps during the day. It's harder to protect his daytime sleep since we're out and about at appointments and with the other kids.

Ben, you are precious and we love you!

Knock, knock.

At dinner tonight:

Corrie: Knock, knock.

Dad: Who's there?

Corrie: Banana.

Dad: Banana who?

Corrie: Hold hands. Don't cry. It's only a joke!

She's got 3 knock, knock jokes all muddled up together. I thought it was funny.

Here's a picture of Corrie and me from our Mom & Daughter date to see "The Nutcracker" in December. She has so much enthusiasm for life! She's a delight. (The big white bow was her idea).

PCS

I've developed a condition. I call it PCS (Pre-Cardiologist-Syndrome). It's similar to PMS, in that there are a couple of good weeks with generally positive energy and emotion, followed by a week or so of higher stress and mood swings. This is how I feel during the week preceding one of Ben's cardiology appointments.

Ben typically has one cardiology appointment every month. It's been about 6 weeks since our last visit. During the week before a cardiology appointment, I find myself worrying about every little thing: is he eating enough? does he seem sweaty? are his hands and feet turning blue?

He has an appointment tomorrow morning at 8 a.m. I'm looking forward to it, because it feels good to take a look and make sure that everything is OK. I also dread it, because - what if everything isn't OK?

As I think about Ben's little body and his heart, I am often reminded of 1 Samuel 16:7:

But the LORD said to Samuel, “Do not consider his appearance or his height, for I have rejected him. The LORD does not look at the things people look at. People look at the outward appearance, but the LORD looks at the heart.”

This happens when Samuel is sent to find the next king of Israel. Samuel is impressed with some of the older sons of Jesse, but God tells Samuel to disregard man's outer appearance. God leads him instead to anoint David, who is Jesse's youngest son and a shepherd.

I know that the passage is talking about David's heart for God - and not his physical heart - but it gives me great comfort. I am thankful that God created Ben and knows his heart; that He sees the hole and knows exactly what's going on inside Ben's body.

Ben's Birth Story ... part 2

So I wrote Ben's birth story already, but it ended a bit abruptly. At the time, I just wasn't sure how to talk about the hours immediately following Ben's birth. When I think back on Ben's arrival, I feel like I had two distinct experiences. The first is more the labor story, I guess, and the second involves everything that happened after he arrived.

So ... Ben was born. And he cried. And I was so glad to hear that little squawk. And then he peed on the OB. :) And I felt like a rock star! I was super impressed with how quickly labor and delivery went, and I just felt proud of myself. I have felt the same way after each delivery - it must be the endorphin rush or something.

I remember trying to see him, but not quite being able to. The nurses were in the way, cleaning him up a bit and wrapping him up so I could hold him. And as I held him, I thought, "he doesn't look like Evan and Corrie did." I looked at his eyes and his ears and his neck, and I thought ... he might have Down syndrome. I held him and touched him and waited for someone to say something. Instead, all the nurses and the doctors said "Oh! He looks great! He's perfect!" (And he is).

I noticed a nurse start to say something, but the NICU doctor looked over at me and shook his head to discourage her. I nursed my sweet baby, and I think we were both comforted by that contact. The hospital staff let Crystal back into the room, and we just looked at Ben and enjoyed him. Newborns are precious.

After a little while, the nurses took the baby away to do whatever they do in those first hours (a vaccination? the hearing test?). I didn't mention my suspicions to Crystal, because it just felt weird. If something were "wrong" with the baby, shouldn't I tell my husband about it first?

Crystal went to sleep on the chair-bed, and I lay in the delivery bed, mind racing. How surreal! I kept reminding myself: yes, I did come to the hospital just a couple of hours ago, I had a baby, and the baby is somewhere nearby. I replayed the look between the doctor and the nurse, and I thought about the baby's features, and I wondered.

I keep saying "the baby" because Emmett and I hadn't completely settled on a name yet. It didn't seem right to name the baby without his father's official input. On all my notes from that night, I wrote "LF" for Little Fellow.

I prayed. I got out my Bible and I read Ephesians. I couldn't concentrate, but kept noticing all the phrases that point to God's love and ultimate control.

Around 5 or 6 a.m., the hospital pediatrician came by, introduced himself, and said, "You know about the Downs, right?" I stammered, "Yes." Then he said something about doing a chromosome test (karyotype) to confirm. I can't really remember this conversation very well - I wish I did! It was so early in the morning and I had just had a baby. I remember when he left the room, I asked Crystal, "So, this means that the baby has Down syndrome, right?" She wasn't totally sure either. (We had both been sleeping). I felt certain that the baby had Down syndrome, but I couldn't tell Emmett yet because he was not there - and his cell phone was almost dead. I felt like none of this would be real until my husband arrived.

It was a weird morning. They didn't have a room in postpartum available, so I stayed in L&D. I talked to all the grandparents, but didn't want to tell them anything before I told Emmett. I wasn't sure what to post on facebook. Emmett and the kids still hadn't seen our new family member. Crystal went home to help with the kids (God bless her and Rob for all their help!) and I waited for Emmett to get there. At some point, a nursery nurse brought the baby in so we could breastfeed and she had a whole list of the tests that he had had or was going to have: EKG, chest xray, renal ultrasound, heart ultrasound and more. I asked her if the baby had Down syndrome, but she couldn't exactly say. I didn't understand why we were running all the tests if his diagnosis was uncertain. She thought we would be able to see the pediatric cardiologist around lunchtime.

Now (after getting more info) I know that the official chromosome test takes some days to run, but Ben had many of the clinical markers for Down syndrome. So the diagnosis was not official, but very probable. My OB stopped by and told me that she knows a mom who would be glad to talk to me about parenting a child with Down syndrome.

Emmett arrived at 11 a.m. The baby was off getting tested, and I told him about all the conversations I'd been having. I was SO glad to see him. He didn't get to see our son for another hour or so, though, because of all the tests.

The day dragged on as we waited for info. Eventually, my mom arrived, and we asked Crystal to bring the kids to the hospital. They got to hold their little brother - super cool. It was great to see them with him and so good to all be together as a family. After the visitors all left (kids for another sleepover with Crystal's family), the pediatric cardiologist stopped by. Finally!

Dr. K told us that babies with Ds often have cardiopulmonary and kidney issues, so they checked out our baby's system. Ben had a large ASD, and it was likely that he would have to have surgery sometime between 4-12 months. He also had a couple of other smallish issues.

** Oh my goodness! This is long. Sorry! I just want to make sure I write it all down so I can remember. And I know that in Ben's first few months, I read blog after blog and birth story after birth story. Hearing how other people processed a postnatal diagnosis was comforting. All the same, I will stop here for now. Maybe in a couple of days I'll write more. Thanks to everybody who actually read through this! **

For reading this much, you will be rewarded with a picture of the Little Fellow at 5 months:

Please ignore all the milk on his shirt and concentrate on that big smile.
Isn't he cute?

Happy New Year!

We had a wonderful Christmas! We drove to Mississippi to visit family: my mom, my brother Derek and his wife Arthi, their two children Jake and Olivia, and my brother Mark. We also got to see two sets of uncles and aunts and a cousin and some second cousins. It was great to connect with family again.

On our way back to south Texas, we stopped in Houston to cheer for our Northwestern Wildcats against the Texas A&M Aggies in the Meinecke Car Care Bowl. Some pics:

The 'Cats couldn't pull out a win, but they did give it a good try at the end. It was fun to sing the fight song and sit in the stadium. We may try to go to another big game with the kids ... in a few years. They did great during the first half, but lost enthusiasm after the halftime show. :)

Each of the kids got a matching purple Wildcats shirt to wear to the game. I wore my old #51 jersey from college (Yay Pat Fitzgerald! For those who don't follow NU football, he was our all star middle linebacker when I was in school - and now he's the head coach).

Hopefully I'll post again soon. I have lots of thoughts about December, 2011 and plans for 2012. And Ben is 5 months old already!