Syndactyly

I remember watching Brad and the nurses looking at Caleb's hands while my doctor was finishing things up with me after delivery. I remember Brad putting Caleb in my arms and pulling his hands out of the swaddle to show me what he had been talking with the nurses about. He explained to me that Caleb's middle and ring finger were connected on both hands. For a brief hour or so, that was the only thing "wrong". I remember the moment that I forgot about his hands, because I learned that he had Down syndrome. I remember the moment that I forgot about his hands again because not only did Caleb have Down syndrome, but he also had a problem with his heart. His syndactyly was the first congenital "defect" that we learned about and has been one of the last things on our priority list for the last five months.

But now that his heart surgery is behind us, we had an appointment with a hand surgeon this morning. We already met with a pediatric orthopedic surgeon and had done plenty of research on our own, so we weren't going into the appointment seeking much info except for when Caleb would have surgery. The doctor examined him and said that he'll want to operate on each hand separately. Caleb's syndactyly on his right hand is more complex than the left, so we'll do the right one first. We'll see the surgeon again in September and will schedule the first surgery at that time. It will probably be done toward the end of this year (Oct-Dec), just depending on what works best for all of us at that time. Surgery on his left hand will probably be sometime in early 2014.

Five month recap

Weight: 12lb, 13oz

Length: 23.5"

Clothing size: 3 months

Diaper size: size 1 or 2... he's in that weight range that overlaps between the two sizes.

Eating: Caleb pulled his NG tube out on March 9th. Before putting a new tube in, we decided to give him a shot at taking his bottles without doing any NG feeds. After several days of taking lots of small bottles every 1-2 hours, he's now taking bigger bottles less frequently. Today, he's been taking 90mL (approx 3oz) every 2.5-3 hours. For the day, his goal is 540mL of 27kcal formula. He's been getting close the last few days. Right now, we're on tracking to reach that goal today! He's also eating 2tsp of rice cereal for "dinner".

Sleeping: Caleb usually sleeps from 11:00pm until 7:00am. We give him medicine at 11:00pm and 7:00am, but I think he'd sleep longer if he didn't have to be awake for the medicine. A few nights ago, he started sleeping in his crib instead of his Rock & Play Sleeper. He naps 15-30 minutes at a time throughout the day. He's still a pretty unpredictable napper, because his appointments get in the way of keeping a consistent schedule.

Highlight of the month: Caleb has been making great progress in his development and surgery recovery. He was rolling from tummy to back before surgery, but didn't do it again until March 20th. He is doing so well with that now, and his head/neck control is getting much better. Caleb's PT and OT are very pleased with his progress.

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Caleb's week

Here are a few iPhone photos from Caleb's week...

Caleb and his friend, E, after an infant massage seminar

Caleb checking out his new high chair

Caleb enjoying bath time without any tubes stuck to his face. Doesn't he look so old here?!

Caleb having a serious conversation with his bear

 

Caleb and Grandpa

 

Caleb telling secrets to his monkey

 

Brad and Caleb getting ready for March Madness

 

Caleb visited Brad's coworkers one afternoon

 

Caleb constantly pulls his nasal cannula off. We go through lots of tape and Tegaderm.

World Down Syndrome Day

Happy World Down Syndrome Day! 

Goodbye NG tube... hopefully forever!

While I was doing laundry Saturday evening, Caleb was playing in his crib. All of a sudden, he started screaming. I ran to his nursery and discovered that he had pulled his nasal cannula (oxygen) off and pulled his NG tube about 3/4 of the way out. The tube was due to be changed soon anyway, so I pulled it the rest of the way. The cardiology PA told us that if Caleb ever pulled the tube out, we should leave it out for a few feedings and see how he does. So yesterday was our first full day without a tube. I kept a record of how much he ate through the day, and he took 76.9% of his daily goal! That's not too bad, considering that he has been taking about 60-65% from the bottle and 35-40% through the tube. He's on track to do even better today!

We've asked so many of you to pray that Caleb's feeding would improve, and I see that those prayers are being answered! Please continue to pray that he will progress toward reaching his daily goal and that we won't have to put a new tube in.

UPDATE: He took 90.7% of his goal on Monday, March 18th!

Care for Couples Struggling with Infertility

If you are walking through your own infertility journey or if you know someone going through that difficult time, take a few minutes to listen to this podcast.

Care for Couples Struggling with Infertility - by John Piper & Tony Reinke

http://www.desiringgod.org/resource-library/ask-pastor-john/care-for-couples-struggling-with-infertility

This is one of my favorite quotes from the podcast...

"His giving and his withholding are all done in an infinite wisdom as he shapes and guides our lives for our ultimate good and glory of His name." - John Piper

Six weeks post-op

It's been six weeks since Caleb's surgery. So long, sternal precautions!

Heart update

Caleb had a cardiology appointment this afternoon. The PA said that his heart looks better than it did at his last appointment, so we're continuing in the right direction. Over the last three weeks, we've weaned Caleb's oxygen from 1/2 liter day and night to 1/16 during the day and 1/8 at night. We will continue gradually weaning him down and will hopefully be off of oxygen in the next couple weeks.

As for eating, that's definitely my biggest struggle and frustration now. He has been taking about 50% of his bottles by mouth, and we've been feeding the rest through his NG tube. He had a 20 minute time limit on bottle feeding, but we were told today that we can increase his bottle time to 30 minutes. As he continues to recover from surgery and can eat longer now, I hope that we'll be able to get rid of the NG tube soon. Caleb is going to start speech therapy soon, so that may also help.

Before we left the house for Caleb's appointment, I told him that he could take one ball. I held them out, and he grabbed for both. He's definitely his father's son. And as seen in the photo below, he got his way. He's undressed and wrapped in a blanket, because we had just finished his weight check and were waiting to have his ECG done. There's no point in redressing between all the steps of his cardiology appointments.

Finding my way out of the airport

After Caleb was born, I felt like I was being forced into a world I wasn't ready for. Around every corner was someone ready to tell me something I didn't want to hear. I can't even count how many people told me about someone they knew who had Down syndrome. Their stories were probably meant to comfort, but they scared every ounce of hope and optimism out of me. We were inundated with information about organizations and support groups. I resisted meeting other parents of children with special needs. People told us that we had arrived in Holland (read the "Welcome to Holland" story here). The only place I wanted to be was in Italy.

Before we went to Dallas for Caleb's surgery, a friend told us about a family that she knew of through a mutual acquaintance. Their son was in Dallas for heart surgery, and they were staying at the Ronald McDonald House. We were given the mom's name and phone number. Brad and I decided that if we happened to meet the family, that would be fine. We weren't going to call her and initiate anything though. I didn't want to go out of my way to meet them. Yes, their baby had heart surgery, but they couldn't relate to everything else that we had going on. We were going to Dallas to fix Caleb's heart and then move forward. At some point, I needed to connect with parents of kids with Down syndrome... but I didn't need to connect with parents of heart babies, too. 

The day of Caleb's surgery, Brad and I were in the ICU waiting room. A lady walked over to the thermostat near us and asked if we minded that she turn the temperature up. We said "no" and then asked about her child... just making small talk. She told us that her son had surgery a couple weeks before and was having a cath that day. Somehow it came up that she was from Edmond, and we realized that she was the mom we had been told about. As the conversation continued, we found out that her son was born only 10 days after Caleb, that his heart defect was similar to Caleb's, and also that he has Down syndrome. Wow. This mom, who I thought couldn't relate, was going through the exact same things as us! I felt like such a fool for thinking that I didn't need to meet her. God knew I needed Jamie's friendship over the last month and going forward, though. I'm so thankful that He orchestrated our meeting, despite my opposition. 

Our boys have both been home from the hospital for a few weeks, and we finally were able to get them together for a play date yesterday. I had so much fun watching them interact, and I know they will be great friends for years to come. 

In response to the "Welcome to Holland" story, another woman wrote a story called "Amsterdam International" (read it here). Thank you, Jamie and Emerson, for helping me find my way out of the airport. 

Philippians 4:19-20 And my God will supply all your needs according to His riches in glory in Christ Jesus. Now to our God and Father be the glory forever and ever. Amen.

Spread the word to end the word

Today, March 6th, is a day of awareness for a campaign called "Spread the word to end the word". The purpose of the campaign is to encourage people to stop using the R-word (retard/retarded). I pray that our community and world will become a more respectful society. I pray that Caleb will always be accepted and will never have to hear such hurtful words. Please visit the campaign's website to learn more and take the pledge.

John Franklin Stephens is a Special Olympics athlete and Global Messenger. In 2008, he wrote an article about how the R-word hurts him. Please take a few minutes to read his powerful words. "Using the word 'retard' to describe me hurts "

I hope you will consider what your words and actions mean to individuals like Caleb.

One year ago... the day my dream came true

Brad and I were married on August 9, 2008. We agreed early on that we wanted to be married for a couple years before having children. By September 2010, we knew that it was time to grow our little family. I figured it might take a few months, but surely I’d be pregnant by Christmas. Christmas came and went. No baby.

By February 2011, we were starting to get a little concerned. I made an appointment with the PA at my ob/gyn’s office. She ordered some preliminary lab work, and everything came back normal. She said to keep trying for a while longer. Three months later, I had my annual appointment with my ob/gyn. After talking about our struggle to conceive, she suggested I try a drug called Clomid. We tried that medication for three unsuccessful cycles and then decided that it was time to move on to a reproductive endocrinologist. We called for an appointment in July 2011, but his first available consultation wasn’t until October 2011. So we waited.

After reviewing our medical records, discussing our history, and doing an exam, the doctor suggested a probable diagnosis of polycystic ovary syndrome (PCOS). Lab results confirmed the diagnosis, and we were ready to move forward with treatment. We tried Clomid again, but this time I was closely monitored with ultrasounds and blood work. I also participated in a study that they were doing and was randomly assigned to an alternative administration schedule of the medication. Over the next few weeks, we found out that I was unresponsive to 50mg, 100mg, and 150mg Clomid. On December 22nd, my 30th birthday, I started taking a medication to “reset” my system and get ready for a new treatment plan. Another Christmas came and went. Still no baby. It was a difficult time, but I was hopeful about trying a different medication. In early January 2012, I began my first round using a medication called Femara. An ultrasound a few days later showed that I was responding to the medication. This was my first real opportunity to possibly become pregnant, and we were cautiously optimistic that the cycle would work. But we found out on January 31st that I wasn’t pregnant. Since I had responded well to Femara, we tried it again in February. I responded to the medication, and then we waited. Here’s my journal entry from March 1, 2012...

It's 4:10am. I've been awake for ten minutes. Right before I woke up, I was dreaming that I was at church, and the congregation was singing "Great is the Lord". As I was singing, my right hand was resting on my very pregnant tummy. Oh my... it was amazing!

CHORUS
Lord I want to lift your name on high
And Lord I want to thank you
For the work you've done in our lives
Lord I trust in your unfailing love
For you alone are God eternal
Throughout earth and heaven above

It’s been two weeks and a day since my HCG trigger shot, so I decided to take a pregnancy test this morning. The chorus of that song ran through my mind over and over during the three minute wait. I truly expected a negative test. And that was okay, because through all we've been through, I'm trusting that God's plan is bigger than I can understand. His ways aren’t always mine. After the three minutes, I looked and saw two pink lines! It's positive! We're pregnant!!! Today is exactly eighteen months since the start of our first cycle of trying to get pregnant. I can’t wait to tell Brad when he wakes up! “Lord, I want to thank you for the work you’ve done in our lives”

That was a moment I prayed for and dreamed of but didn't know if I would ever experience. Each of those eighteen months that we were trying to start our family, I had hopes of becoming a mom. Seventeen of those months ended with disappointment and, eventually, renewed hope for the next time. But on March 1st, 2012, my prayer was answered. My dream came true. I was a mom. Brad was a dad. We were proud parents of our precious baby... our Caleb Drew.