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!
I prayed for this child, and the Lord has granted me what I asked of him. - 1 Samuel 1:27
Monday, March 18, 2013
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
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
Friday, March 15, 2013
Tuesday, March 12, 2013
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.
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.
Thursday, March 7, 2013
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.
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.
Wednesday, March 6, 2013
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.
I hope you will consider what your words and actions mean to individuals like Caleb.
Friday, March 1, 2013
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.
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.
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