Tuesday, March 25, 2008

Staying strong

We are taking it as a really good sign that Luke is on the mend seeing as he slept all night in his own crib last night. The three nights before that he was restless and fussy and we would finally bring him into our bed so we could salvage some sleep hours. We heard him cough a couple times through our monitor around 9pm and 10pm, but he was able to settle himself back down. Way to go, Luke!

For those of you who don't know, we have come a LONG way the past 5 weeks in working with Luke on his sleep habits. In a little over a month, we have gone from getting up with him 2 to 4 times a night for a bottle feed or comfort session to him sleeping quietly all night in his crib. We are praising the Lord for this victory! When we run into hiccups like the past 3 or 4 nights, we remind ourselves where we were in February.

I'll never forget a friend of mine telling me that she felt like a different person after she and her husband had begun getting regular, full-nights of sleep. She has a child with medical issues as well and she told me that the sleep deprivation was at times harder than some of the medical issues. It's hard to believe, but it really is true. So, after 14 months of interrupted sleep, Roger and I got the okay to wean Luke from his night bottles and begin sleep training. We chose a middle-of-the-road approach, with some tears shed, but using our presence in Luke's room at regular intervals to help comfort him.

Luke finally slept through the night for the first time on March 2. And not again until March 17. But the improvement was vast and he was only waking up 1 time each night for a quick little mommy or daddy fix.

It comes as no surprise to me that sleep deprivation is used as a torture device. Now that Rog and I are getting a bit more sleep, life's daily hurdles just don't seem so tall. We are proud of you, Luke. You continue to surprise us with your adaptability!

Here's a quick pic of how Luke sleeps. Booty in the air! Doesn't seem comfortable to me, but whatever works, right?

Thank you for your prayers for Luke's cold. I really do think he's feeling better. He still has a bit of a runny nose and a small cough, but the things we watch for and worry about have not developed (labored breathing, change in color, puffy eyelids). I was thinking more about that verse I posted on Saturday, the one about bringing our requests to God, instead of letting anxiety eat at us and distance us from God. The words in that verse that keep nudging at my heart are, "...with thanksgiving". It's easy for me to give thanks and praise to God when He answers my prayers and petitions in the fashion that I want, but am I as consistent about presenting my requests with gratitude when His answer is yet to be seen? I don't think the Lord means in this verse that our gratitude is conditional to God's answer. I think He wants our heart to be grateful simply because 1) we have a high King that is accessible to us and sympathetic to our needs and 2) we know that even if He answers our prayers differently than we expect, it is for our good and His glory.

Saturday, March 22, 2008

Cold season still in session

After a fitful night of sleep, Luke woke up this morning with a runny nose. It may seem a little strange to ask for prayer for a head cold, but with Luke's tendency to accumulate fluid in his lungs, it never feels like "just a cold". So, our prayer request would be that Luke's immune system would quickly fight off this cold and that nothing would develop in his chest. Also, with our focus on weight gain, we ask for prayer that Luke's appetite would not be affected by this cold. God tells us, "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God." (Philippians 4:6) So that's what we will do!

Friday, March 21, 2008

Weight-y issues

It's amazing when we get to see God bring about great blessing from what we think could only be a negative situation. We got to see God work this way when last spring we began finding blood in Luke's stool. After pediatrician and Emergency Room visits, we finally were referred to a G.I. doctor at Mary Bridge. Of course, with a heart baby who has an NG feeding tube, doctors tended to overlook the simple answer. After trying numerous different formulas, replacing his NG tube, getting blood drawn and tested, etc. our G.I. doctor took about two seconds to diagnose Luke with a milk protein sensitivity. I stopped breast-feeding the next day and we started Luke on a hypoallergenic, elemental formula and we never saw blood in his stool again!

Seeing blood in your child's stool is very disconcerting and even though we were nervous that Luke would not outgrow this sensitivity, we soon saw God's purpose in this benign diagnosis.

The blessings of Luke's milk allergy:
  • It forced him to learn how to take a bottle. I had already been thinking about stopping breast-feeding Luke. As much as I wanted to give him breastmilk, breast-feeding was not the relaxing, enjoyable experience for us as it should be. I felt pressure to make sure he was taking enough from me, which led me to watch the clock and feel anxiety if he pulled off before I thought he was ready. So, with this new diagnosis, I would have had to go on a dairy-free diet and at that point, I thought it was better for everyone for him to drink from a bottle.
  • Through the G.I. clinic, we had a wonderful resource if and when Luke needed his NG tube replaced. No longer did we have to go to the E.R. if he pulled it out (which needless to say was a nightmare), but could simply go to the Mary Bridge Health Center office and have our wonderful nurse do it quickly and in a much less stressful environment.
  • Our G.I. doctor works hand-in-hand with a dietician and assigned one to Luke's case. This may have been the biggest blessing of all. Judy Tuider has truly been an exceptional guide in helping us to help Luke keep growing.
All that to say, we have seen Judy either weekly, bi-weekly or monthly since we met her last May. She acts not only as Luke's dietician, but as my counselor too! She has kept my anxiety over Luke's growth in check and given our family countless pieces of advice on how to make eating as enjoyable as possible for Luke. She believes that is our number one priority with Luke.

Two weeks ago, we saw Luke drop several ounces for the first time since last spring. The more people I talk to, the more I am understanding that this drop is not a symptom of Luke's heart function changing (which is my big fear) but simply of his increased mobility and his decrease in high-calorie formula (he only takes one or two small bottles per day — the rest is his milk + Pediasure mix in a sippy-cup).

We saw Judy again this morning for a follow-up weight check and Luke didn't gain any weight. Roger has already reminded me several times that this also means he didn't lose any in the past two weeks. To be honest, I was pretty discouraged. It is a huge challenge for me to relax about Luke's weight and trust that his body is perfectly designed to know how much food he needs. I definitely need the Lord's strength and wisdom in how to give Luke the resources to grow, but with a relaxed spirit. Whew, that is tough! Rog and I have seen more than once that the days when we feel more tense about his eating, he eats less and resists our attempts at feeding him more.

So, the new plan is to continue as we are, giving him 3 meals and 2 snacks per day of calorie-dense foods (avocado's, cheese, meats cooked in olive oil, olives, etc.) and mixing Pediasure with a small amount of whole milk. He can have this milk mixture with meals and in between. Judy is also prescribing for us another formula called "Just for Kids" that is 45 calories per ounce (can you say THICK?!) that we will give him before bed. Only at this time, though, since she doesn't want that drink to interfere with his hunger for people food. We will see her again in two weeks for another weight check.

Roger and I heard myriad stories of families whose heart kids seemed lethargic or low in energy and we prayed specifically for Luke to be strong and active. God answered this specific prayer as Luke is one of the most active kids I know. He is, like his dad, constant motion. I was reminded today that although this probably contributes to his weight dip, I am THANKFUL that he is such a strong and curious boy.

I am also reminded today that God wants our absolute trust. I want to simply look at my healthy and nourished child and know that he is ultimately in God's perfect care. When I let myself perseverate on pounds and ounces, I am showing my lack of faith. Lord, give me more faith, faith as small as a mustard seed!

Tuesday, March 18, 2008

History for first-time visitors

“For great is your love, reaching to the heavens; your faithfulness reaches to the skies.”
-Psalm 57:10
“He who did not spare His own Son, but gave him up for us all-
how will He not also, along with him, graciously give us all things?”
-Romans 8:32

The above 2 verses truly exemplify our journey with Luke's heart condition. Luke's diagnosis, his birth and life has grown us, stretched us, kept us on our knees and brought us closer to our good God.

Lukas Scott Smith was born on January 9, 2007 at 12:14 pm and has been our greatest gift every moment since. Through Luke, we have seen God’s faithfulness with new eyes and his generosity with new hearts. God does not promise to give us “all things” we want, but he does give us “all things” we need. More than any other time in our lives, Roger and I relied upon this promise and saw its fulfillment time and time again. When it was peace we needed, peace we graciously received. When it was strength we needed to face the unknown, strength we graciously received. When it was faith we needed to trust God’s plan, faith we graciously received. We are singing God’s praises as we reflect on His goodness to us.

Luke was born with a congenital heart defect, diagnosed at 20 weeks in utero with one ventricle instead of two. We knew even before he was born that he would face three open-heart surgeries. As of August 2007, Luke has successfully come through two of his three heart surgeries (plus a diaphragm surgery). 1 year old and two open-heart surgeries under his belt. No wonder we call him our little champion!

The morning of February 15th Luke underwent his first surgery, where our wonderful and renowned surgeon, Dr. Cohen, placed a pulmonary artery band on Luke to restrict the amount of blood flow to his lungs. Luke’s biggest struggle post-surgery and for the following three months was to put on weight. Before we left Children’s Hospital in March, Luke had a Nasal-Gastro (NG) feeding tube put in to help with his weight gain. We began feeding him through the night through his tube and slowly but surely began to see his weight creep upwards. We were blessed with a wonderful dietician at Mary Bridge who continues to help Luke pack on the pounds! At five months old, we removed the NG feeding tube and Luke has gained weight steadily since.

Late spring and summer was a wonderful time for the Smith family, as we felt more comfortable taking Luke out and about. At this point in between surgeries 1 and 2, it was important that we keep Luke as healthy as possible. He got to visit NBC camps and see his Daddy at his best, he played in his kiddie pool on our deck and even went swimming in a real pool in July. Even the simplest things like taking Luke to church and to dinner in a restaurant felt like such a gift.

We headed up to Children’s for Luke’s second surgery, the bi-directional Glenn and the Damus-Kaye-Stansel on August 13. This operation was again done by Dr. Cohen and went very well. This was a much bigger operation than the first, so Luke stayed in the Cardiac ICU for 8 days before moving to the surgical floor for another few weeks of recovery. I can’t call this post complete without sharing how much we love Children’s Hospital. The facility and the staff are truly second to none.

We came home on September 6, just in time for the Puyallup Fair! Roger was able to start school on time and we treasured being back in our own home. The fall season found us going for runs, picking out pumpkins at the pumpkin patch, eating solid food, spending time with all his grandmas and grandpas and of course hunting for the perfect Christmas tree.

I would need a book to capture all the blessings of this past year, but I thought I’d share a few particular ones to close ...

  • Dr. Stefanelli (Luke’s pediatric cardiologist) and the Northwest Children’s Heart Center family. We couldn’t have a better team on our side.
  • The countless prayers said on behalf of the Smith family.
  • The joy of knowing that Luke is God’s perfect creation; that God’s plan for him is bigger than we can dream.
  • Our family and friends that have selflessly supported us in numerous ways.

Wednesday, March 5, 2008

Luke gets an A+ from Dr. S.

This was the longest we have gone in between cardiology appointments (2 months) and I was anxious to have Dr. Stefanelli get his eyes (and stethoscope!) on Luke. I had noticed the week or so before this appointment that Luke's hands and feet were turning a little more "blue" when he was cold than they ever had before. In all other ways, he seemed fine, but I was a little nervous about this change in his coloring.

Before our appointment, we headed over to radiology for a chest x-ray and got to say hello to all our x-ray friends. They are fantastic there, so quick and good with Luke. I zipped Luke back into his jammies and walked over to Stefanelli's. They did the usual tests, ECG, blood pressure, weight and height, and sat's. Everything looked great, and I was shocked to see his sat's the highest they have ever been — between 88 and 90%. I had myself convinced they had dropped.

Dr. S. came in with the news that Luke's chest x-ray was completely clear and dry. This is the FIRST time since his Glenn back in August that he's had no traces of pleural effusions in his lungs. Praise the Lord! Because of his clear lungs, we are dropping one of Luke's Lasix doses. He now gets only one dose per day of Lasix and one dose per day of another diuretic, Diuril. Nothing makes us happier than dropping doses! Luke will continue his same dose of Enalapril (his blood pressure medicine) and his same dose of Spironolactone (a potassium-sparing diuretic). The only other change is increasing his aspirin dose from 1/2 tablet every other day to 1 full tablet every other day. He will be on an aspirin regimen for life.

Dr. Stefanelli quickly reassured me that the slight discoloration in Luke's extremities is completely normal for these single ventricle kids, that even though his heart is fairly efficient at this point, it's still a lot to ask for his one ventricle to pump blood to the entire body while at the same time perfusing his blood with good oxygen all the way down to his toes. This info was definitely a huge relief.

After our check-up, we made our rounds through the office to say hello to our friends on staff at Northwest Children's Heart Care Center. I am so incredibly thankful for that office and their love and care for us. You would be hard-pressed to find a kinder, more capable group of people to care for your child.

Saturday, March 1, 2008

Jamie's Heart

Roger and I were invited to and attended the First Annual Fundraising dinner for an amazing organization called Jamie's Heart Foundation. This foundation was created by her parents in the memory of beautiful Jamie Noel Hannah, who passed away from her congenital heart defect in December of 2006. It's mission is to "... assist families who are battling childhood heart disease. The foundation supports and networks with other community organizations that provide direct family support and services to children diagnosed with a congenital heart disease and their families. Jamie's Heart Foundation directly provides assistance to these families and their children." Assistance comes in the form of monetary as well as emotional support.

We connected with this family through my eye doctor, oddly enough. (But really, God's work and timing is never a coincidence!) Jamie's aunt Jen is a nurse at East Main Vision and I was able to share with her Luke's story and in turn, hear about Jamie's journey with her heart defect. She told me about this foundation her brother was organizing and gave me his email address. Tim and I connected over email and his heart for helping other families, even after the terrible loss of his daughter is incredibly admirable to me.

I often think about the choice we have when we experience such profound loss. Do we allow ourselves to question God and His goodness, dwelling in our anger and bitterness; or do we do as the Hannah's have done and in faith and ongoing grief, work for good? I pray that without hesitation I would choose the latter route.

This organization is now ready to begin helping families and I can't wait to see what God does through it! You can find out more about this amazing ministry by clicking here.