A Baby Changes Everything

That statement has never been truer than in these last eight months!

As I listened to this song at the Christmas concert at church, I couldn’t help but think about how our baby Will changed so many things for me. I’ve learned more about dependence, the NICU, how many cc’s are in an oz., the helplessness a parent can experience, what pediatric therapy looks like, what a neonatologist can and can’t tell us, what it means to be surrounded by love, how it feels to know that people are hoping and praying for us when have trouble doing those things for ourselves. Our baby changed so many things for us and the people who are closest to us.But, of course, the baby who changed everything for everyone is Jesus. As I listened to the songs about Him, one in particular was more meaningful this year than any other. “Mary Did You Know” talks about all of the things that Jesus will do in His life that she couldn’t know of when He was just a baby. She was already pondering in her heart all of the things that were happening at His birth, but the song speaks of events even further down the road:
Mary did you know?

The blind will see

The deaf will hear

And the dead will live again

The lame will leap

The dumb will speak

The praises of the lamb.

Of course, the promise her baby boy brings for my baby boy is that, whatever Will’s future may be on this earth, in heaven he will walk and sing praises to Jesus. And it also reminds me that as I treasure these moments with both of my children, as most mothers do, I cannot know what they will do in their lives. I have no idea what the Lord has in store for my children.

For now, we are seeing Will gain strength every week. His little neck and trunk are stronger and more stable. His hands are more opened than closed. He’s “eating” cereal and fruit—he loves it but I think he also loves the mess he makes! His therapists are starting new exercises because he’s mastering the ones he’s been working on for the last couple of months. Libby is becoming such a big girl. Her independent spirit is really showing itself in mostly good ways. The other day she asked for popcorn. After I made it, poured it in a bowl and set it on the counter to cool, I turned my back to her and the popcorn to finish unloading the dishwasher. The next thing I know, I hear her babbling as she was walking up the stairs. I looked over at the counter and the popcorn bowl was gone. She’d taken it, headed up the stairs and, as I followed the trail of popcorn, I found her waiting for me in the TV room on the couch. I guess I was taking too long! In addition to eating popcorn, she loves to "cook" and eat peanut butters (as she calls it!).

She loves to sing, especially “Twinkle, Twinkle, Little Star”, the ABC’s, “Away in a Manger”, "Jesus Loves Me" and “Patty Cake”. When Will sneezes, she says, “Bless you, Baby! Bless you!” She also likes to announce when he has a stinky diaper. Such a good sister! She’s working on obeying the first time she’s asked to do something (not something I’ve even mastered) and having a happy heart when Mommy can’t do everything she wants exactly when she wants it done (again, patience is not my strength either).

They both had pink eye and ear infections. What fun it wasn't. Other than those little viruses, our Christmas was filled with family, food and the joy only a child can express while opening gifts! Libby thought she’d hit the jackpot because she opened all of Will’s presents along with her own. She’s enjoyed playing with her toys and showing Will how to play with his.

Right before Christmas, I attempted to take some cute pictures of the kids and ended up with this...

Oh well!

We've been able to see friends and family over the last couple of months: Andrew's mom came the week before Thanksgiving and Libby was so happy to see her "Grammy". Andrew's newest nephew Dylan and his parents were here for Thanksgiving. We went to the Christmas concert with Andrew's godparents and it was so nice to be with them for the evening. My friend Courtney stopped by after Christmas to see us and practiced holding Will since she'll be having her own baby in June!

We’re looking forward to a new year. This one has been a full one— we really can’t believe all that’s happened when we stop and talk about it. I know things could have been very different and that made me so thankful that we were able to be together as a family of four for our Christmas celebrations. I was reminded so often this year of God's love expressed through His people as my little family was cared for by our friends and family and at Christmas I was reminded of God's love expressed through the gift of Jesus who gives us hope in this life.

We are meeting with the neurologist in March (9th) so she can schedule his MRI. Clearly it's not something we're looking forward to. Please continue to pray for Will's strength to increase, for his fine and gross motor skills to improve, for his indwelling thumbs to "outdwell" and for his ATNR reflex to integrate. Today I am also scheduling his follow eye appointment to check for low tone in his eyes. All of these things are part of my daily life and Will's and I pray about them often. For some reason though, it is encouraging to know that there are others praying about it to. Again I will say that my greatest strength apart from the Lord and His mercy is the prayers of His people for my family.

I know so many people who read this blog are also facing their own trials. I am praying that we will be mutually encouraged and learn from each other's experiences. One thing that I've learned through all of this is that life is hard, but God is good. He provides comfort, strength, encouragement and hope at times and from places I don't anticipate. He is so kind.

Happy New Year!

Cautiously Optimistic

Our little Will is six months old today! And he’s not little anymore—at his doctor’s appointment yesterday, he weighed 15 lbs! Dr. Langkamp said we needed to cut back on fortifying his bottles because she didn’t want him to get fat--that’s not a conversation I ever expected to have about my little preemie!

He’s thriving: his weight is in the 90^th percentile for his adjusted age (three and a half months) and his head is in the 97^th percentile. He’s in the 60^th percentile for his height. We’re so thankful for these stats!

The big appointment this week was with Dr. Langkamp at the Neuro Developmental Center at Children’s. She will follow Will until he is two. She loved his ability to communicate and said he was very social. He smiled and cooed at her while she was talking! Although he’s thriving, he’s still struggling with head lag. The doctor is concerned about this and few other things she noticed during his exam. We will go back in three months to see what he’s done developmentally. At that point, she’d like to do an MRI to see exactly where the brain injury occurred mostly because he’s not presenting in the way the ultrasound would suggest. This is not the news we wanted to hear at the appointment although it’s not anything we weren’t expecting as we have listened to his therapists and watched his development.

Although it has been a very difficult week, his therapists have been so encouraging as I’ve shared this news with them. As I told each one of them, Will would try to get my attention and would give me the biggest smile or laugh. He’s never done that before and I kept saying to him, ‘You’re not letting Mommy be sad about this.” It was as if he wanted to remind me of who he was: my sweet, smiley boy.

When I told Cathy, his PT, that I wasn’t sure I wanted to do the MRI because I was scared of what it might say, she said, “Will you love him any less?” The answer, of course, is no but the question was important to pose. I am afraid of what we might find out but ultimately is doesn’t matter because he’s our child—we love him always and no matter what. She said, “I’ve noticed in the 20 years I’ve been doing this that, for some reason, children from families who rely on their faith and believe in the power of prayer do better. It’s not that those children never have any problems, but they live better lives.”

We’ve seen the Lord work in Will’s life for six months and despite our discouragement, we know He is faithful, that He loves Will more than we ever could, and that He has a plan for our son’s life.

In the next three months, we will be praying specifically for these things: that his indwelling thumbs would “out dwell”; that he would maintain “midline” with his head and hands; that he would gain head and trunk control; that he would roll from his back to his tummy; that he would show emerging signs of sitting on his own; that he would show emerging sings of crawling.

Dr. Langkamp said that she remains “cautiously optimistic” about Will's abilities. No one can know what the future holds for him and we choose to remain hopeful for his progress. We are so thankful for the progress he's made so far!

Please pray for us: for wisdom as his parents, for trust in God’s plan for our family’s journey and for strength as we continue on in this new territory.

Cathy, who is continually an encouragement to me, said, “Lori, you’ll be so proud of the person you’ll become because of what you’re going through.” I’ve thought about that a lot over that last couple of days and hope that that is always true. No matter what I go through, I want to be pleased with the person I am becoming by God’s grace and His tender mercy in my life. I am not there yet—at all—but I am cautiously optimistic about myself.

Five Months!

My, how time flies! Libby is 20 months old and Will is 5 months old. The days are running together and there is rarely time to reflect on all that’s happening. We took some pictures of Will to show some before and after shots of his growth over the last five months. It's unbelievable how much he's grown (and that he's STILL a newborn!). Looking at the pictures, I can't help but cry. He's so beautiful now and was then too. It was so scary to wait through those first few days but I am so thankful to see how the Lord has walked beside us through all that's happened since then-- even through those things I wouldn't have chosen for us.

After lots of evaluations, phone calls to insurance and letters from the pediatrician, Will is all set up for in-home physical, speech and occupational therapy. I love the women who give him therapy and Will seems to like them too. Libby gets in on the action and often wants to do the same things that Will is doing. It’s a little crazy sometimes as I try to learn the exercises for Will and keep Libby occupied. Thankfully, the therapists understand that when working in pediatric therapy, the most important word is “flexibility”. In addition to the therapy provided by insurance, a friend of mine who does pediatric physical therapy offered to come over on Fridays to work with Will just because. It’s a huge help to have him in physical therapy twice a week.
Will is making progress. His legs are fine, he’s eating well and gaining weight (13.5 lbs), and he’s a pro at tummy time. His neck is still weak when he’s laying on his back but he’s doing a lot more with his arms and hands. Tonight he acted like he couldn’t get them in his mouth fast enough and kept them in there for almost five minutes! Our prayer for him right now is that his neck and shoulder area would be strengthened through therapy and that he would start keeping his hands open more than 50% of the time. We were prepared to work on legs, but it seems our focus is on arms and neck. This roller coaster never stops! Please pray for his therapy—that he makes progress weekly, that I won’t be discouraged so easily when concerns arise, and that Libby will be a willing participant in activities. Two Fridays ago, he laughed for the first time at my dad who was tickling him. It was so funny and we were all laughing so loud, we could barely hear him!

I've tried to keep getting together with friends so Libby will have some contact with the outside world since we're pretty much at home all of the time. She's really enjoying the times we've spend with friends!

Libby has finally grown enough hair in the back for pigtails... but she does not appreciate anyone trying to put them in...

And she learned how to climb up on the dining room table, pour salt all over and say, "Cheese" when we discovered her! So talented!
Last Saturday, my parents kept Will so that we could have some time with Libby. She’s doing really well with Will but we can tell she missed having us to herself—and we miss it too! Will gets lots of one-on-one time in the evenings after she goes to bed but she misses out of having both of us spending time with her.

This year...

Last year...We went to an apple orchard, the same pumpkin patch from last year, walked in the valley, saw the choo-choo train and ate lunch at the Winking Lizard in Peninsula. She had a great time but was not interested in modeling for the camera— just like last year!

When we went to pick up Will, my parents’ neighborhood was having their fall party and had a hayride that went around the block. Between Nanny, Papa and Mommy, Libby rode three times! She loved it (and really loved throwing the hay!). It was great to have a day of fall fun.

I read What to Expect the First Year for the first time this morning. The title is actually hilarious to me— as if any book could have told me what to expect in this first year of Will’s life!! I’ve been reluctant to read it for many reasons but was happy to see that Will is keeping up with the expectations for his corrected age. His thrush has gotten a lot better since he started on Diflucan and he’s such a smiley baby now! Many of our friends have recently had their second babies. We are all in the same boat of chaos and it's been good to have people around who are feeling as crazy as we do. There have also been lots of girls born to our friends. Will has met them all and we'll start praying for his wife-- it would be great if it were one of these fine ladies!

This last weekend, my cousin Tiffany and her daughter Brooke visited us. Brooke and Will are six weeks apart but should have been about 3 1/2 months apart! Brooke showed us what we should look forward to with Will!

It was a breath of fresh air to have Tiffany here. Not only does she make me laugh like no one else, she's my oldest friend and she loves me unconditionally. She's encouraged me, cried with me, hoped with me, emailed me almost daily and continues to pray for me and my family. How am I so lucky to have a friend like her? (Glad no one is here to see me sobbing my eyes out.) She sent me a card after Will was diagnosed with PVL that I've kept in my Bible. Because I hated going to the hospital for the last month he was there (not because of him but because of feeling so much anxiety), I read the verse she included repeatedly before I walked into the hospital most days. Isaiah 41:10 "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." It was absolutely what I needed to remember about God during those days. (This is one of our better pictures together!)We were able to have lots of time together thanks to Grandma Lyn, Andrew and my parents who babysat at different times. At one point on Friday night, before Andrew and my dad arrived, my mom was alone with all three kids who were ALL crying! She said she almost panicked and then thought, "Wait, I've done this before!" (my two brothers and I were all 20 months apart) and, in no time, all were happy again! Thank you for volunteering to babysit while Tiff and I gallivanted!Our biggest accomplishment was sorting through tons of clothes for Will from her son Clay and then from my friend and my sister-in-law. Will is going to be set for the next 6 months although I only kept out the clothes for 3-6 months! Brooke also made out on the clothing swap as she inherited all of Libby's clothes and shoes for the next year. Isn't it great having friends?

My mom treated Tiffany and I to mani/pedis in honor of her mom who would have been 90 on Saturday. She told us that our Nanny would have been so proud of the mommies and wives we've become and that we should celebrate by having some pampering! Thanks mom and Nanny!With two little ones needing so much attention from morning til night, it’s been hard to stay as focused on reading the Bible and praying— although I feel like I pray all through the day sometimes! When I do have the chance to sit and study, it is refreshing to be reminded of God’s faithfulness throughout the Bible to people who did not deserve it. I am humbled because of my need for a Savior— One who is perfect, loving, kind, merciful and trustworthy. There are days when I know my family would appreciate a wife and mother who exemplified those qualities! I am encouraged and strengthened often as I am refocused on an eternal perspective because the worries of our little world seem overwhelming many times.
Over the last few weekends, we’ve been able to see old friends at two different weddings. So many times these friends said to us, “We’ve prayed for you every day and we still are.” No matter how many times someone said this to us, I had to catch my breath and fight back tears. I am nowhere near that faithful to pray for people everyday or even every other day but I am thankful beyond words for our team of prayers. We certainly feel it!

Although Will continues to thrive, we are still praying for health (and all of our), especially through this flu season. He is going to get shots once a month that help prevent RSV and will also get the flu shot in November. Andrew and I have been able to have some dates over that last couple of months and we’ve needed the time away. We continue to seek to have a marriage that is Christ centered now more than ever. We are tying to figure out a schedule for church since we don’t want to take either child around that many people and expose them to various bugs. We’ve missed being able to go regularly but are hoping to rotate services with my parents so we can all go. Most of all we are thankful for this period of sweet baby time with Will. He’s a doll and Libby is a very good big sister to him. We are enjoying being a family!