Monday, June 29, 2009

All good

I write this post with a heart full of gratitude and a body that wants to sleep! It's crazy how emotionally draining these appointments (and the time leading up to them) are.

Most telling of how well Luke is doing is that Dr. S. doesn't want to see us for ANOTHER six months.

First was the EKG, which we couldn't get last time since Luke pulled the stickers off as fast as the nurse could put them on. He still didn't love the idea of the stickers, but with the help of bubbles and lots of encouragement, we got a good reading this time around. I'm sure I've said it a hundred times here, but we LOVE the Northwest Children's Heart Care nurses. They are SO GOOD!

Luke did PERFECT for his blood pressure and his blood pressure was near perfect too. 90/60.

With sucker in hand, we walked Luke over to the weight/height/sat monitor area. It almost brought tears to my eyes seeing my baby step up on the scale and then stand against the wall for height like such a big boy. He was 26.6 pounds and 34 1/2 inches. Sat check was next and Luke was very willing to put the pulse ox on his finger after we first put the pulse ox on dinosaur's tail. Sats were 86-87!

The first reading was 71 and my stomach sunk a little, but I knew in my heart that wasn't right. After re-adjusting the pulse ox on his finger, 86 popped up and everyone liked that number better!

Next was the echo. This is always a bit of a stretch for Luke, to ask him to lie still. He is not a kid that lies around, or sits much for that matter. We'd get a minute or two of stillness out of him before he'd wriggle upright and shout, "OKAY! Time to get down!" Bubbles again came to the rescue, as did his peanut butter crackers. Thankfully, they got good pictures in a short amount of time. Function was great, mitral valve mildly leaky, but it always has been, so no concern there. Glenn and DKS sites looked clear and open, and his atrial septum was still wide open. This has been something they've watched carefully, since between his PA banding and his Glenn/DKS, that septum had narrowed significantly due to scar tissue.

The only change is that we'll increase his Enalapril dose to 2 mLs twice a day instead of 1.5 mLs.

We had talked to Luke a lot about this appointment before the big day and one of the things we mentioned was that Dr. S. would listen to his heart, just like he listens to our hearts with his toy stethoscope. I brought Luke's stethoscope today and when Dr. S. listened to Luke, Luke listened to Dr. S. A sweet moment if I ever saw one!

We talked about the timing of Luke's Fontan and Dr. S. is planning it for late next summer, as long as he hits the 30 pound mark. I really think we can get him there and we can go as late as October if he needs a little extra time. Emotionally, Dr. S. doesn't like his kids to be much older than 3 1/2 for the Fontan, and I completely agree. I wish I could set the date in stone, but then we would probably spend less time on our knees. Oh Lord, thank you for continuing to grow us in You!

I asked about this coming year, if we'll see a decline in energy, a change in color, etc. as we get closer to the next surgery. Dr. S. was confident in his response that he believes Luke will not decline before the Fontan. Because Luke is so strong and energetic now, he doesn't even think we'll see much different pre- and post-Fontan. Maybe just that his lips won't turn into blueberries when he's cold =)

As we were talking about the Fontan, he did mention again that we need to be prepared for those nasty pleural effusions. Luke has consistently struggled with effusions post-surgery and Dr. S. doesn't think this time will be any different. After the Fontan, Luke will have all passive pulmonary blood flow, so when fluid does accumulate, it is more difficult to get rid of. No, we don't like to hear that, but it does give us something very specific to pray against!

On the way to our appointment, we were listening to the hymn "It is Well with My Soul." I felt a much-needed peace, knowing that even if we didn't get the great report we did, God would be our Peace.

Thank you all for praying and checking in on us!

Saturday, June 27, 2009


In a corner of my mind, behind thoughts of heart failure and weight gain, squished in between the worries of developmental delays and athletic limitations, was the concern that Luke would lag in social settings. We made the choice to keep Luke out of nursery-type settings and away from large groups of kids for a majority of his first 18 months. We just didn't want to risk a serious illness. We felt good about this decision, but the thought always lingered that Luke would miss out on important social skills.

I think it's time to throw that theory out the window:

Friday, June 26, 2009

This looks familiar

You know you're a first-time mom when you're surprised to find yourself watching your child re-test boundaries and limits you thought you established months ago. I have breathed sighs of relief that we're not there anymore, only to now find myself asking how we got back here.

Luke has decided he needs to double (quadruple?) check that we were serious about the limits we placed on his little world. Yes, Luke, whining is STILL not okay. No, you STILL can't stomp your feet and expect to get what you want. Crying STILL does not get you into mama's bed at night.

These two-year-olds are smart cookies. They catch us when our guards are down, thinking we are in the clear, that the terrible two's aren't so bad. Then we have to get back down to business and that is TIRING. My husband is so much better than me at consistency in discipline. He definitely is the model for our home and I am thankful we are partners in this process! Weak knees and a missing spine are exactly what a two-year-old wants, but exactly what they don't need.

One phase I am really enjoying is Luke's current love of books. I love to read. Love it and have often hoped that Luke enjoys books like I do. When I find Luke doing this ...

I know it's the perfect time for me to take a shower — one longer than 2.5 minutes.

Sometimes he likes to sit in his crib with all his books and I can hear him through the monitor "reading". He amazes me with his retention of stories! And did you know books are not just good for reading? They are also really good for hiding under and playing Luke's favorite game, "Where are you?" "Where are you?" consists of, you guessed it, Luke hiding and me looking all over the room for him. While I'm looking I usually hear a little voice giving me pointers on where to look. "Maybe he's under the chair!" "Maybe he's in the closet!"

This game would be even better if I could read while playing.

Wednesday, June 24, 2009

June 29th

Our cardiology appointment got moved to this coming Monday, the 29th. We ask for prayers for a great report, specifically:

  • Sats in the mid-80's

  • No concerning changes in Luke's echo or EKG

  • Good blood pressure

  • Luke to cooperate!

Thank you for your prayers, your friendship, your encouragement. We are so grateful for every person, near and far, who walks this road with us!

Wednesday, June 17, 2009

So it's not Coronado ...

But a beach is a beach is a beach, right? And two year old boys don't really know the difference anyway.

Two girls

"Rejoice with those who rejoice; mourn with those who mourn."
—Romans 12:15

Two beautiful baby girls were born this week to friends of mine. Tomorrow, one will go home and one will undergo her first open-heart surgery.

I am rejoicing and mourning, celebrating and crying; I am a jumbled mess of emotions as one baby girl reminds me of all we've gone through with Luke and the other baby girl reminds me of what I grieve.

I grieve not having Luke sleep in my recovery room after he was born. I grieve having to hear NICU monitors beeping and dinging as I fed my baby for the first time. I grieve not getting to bring my baby home 24-48 hours after delivery. I grieve having to do a car seat test before we could take him home.

And yet Roger and I have this beautiful boy who makes us laugh, who sings "God is so good to me", who tests my patience and exerts his will.

I am going to visit my new "niece" today. She is healthy and pink and ready to go home. I so much want to rejoice with my friend today without the mourning sneaking in, but the two are intertwined. Because there is this other baby girl who has a piece of my heart, a sweet baby with a broken heart.

It is important for me today not to let my emotions rule, to leave it at "It's just not fair". All that will do is subtract from Who God is. I have to let Truth rule, so I thought I would write down what I know to be true.
  • God knit both of these babies in their wombs
  • God didn't make a mistake with either of these babies
  • God wasn't surprised that one baby was healthy and the other was not
  • God doesn't love one baby more than the other
  • God has a unique purpose for both of these babies
  • God doesn't see "healthy" and "sick" — He sees His beloved creation, His daughters
  • We have a God that mourns with us and rejoices with us. He is accessible!
  • God will provide for both families exactly what they need
  • There will be a time when we won't know sickness and disease
I still feel jumbled, but God will meet me where I am, give me the grace to rejoice and the hope the endure the mourning.

Monday, June 15, 2009

What's in a name?

It is not a shocking statement to say that we cannot comprehend all of God. We are human, after all. Graciously, God does give us aspects of Himself that help us to see Him for Who He really is.

As Luke's cardiology appointment approaches, I can feel my heart beat with more anxiety than usual. Graciously, God gives us pieces of encouragement that fit our needs perfectly. Today I came across a list of names ascribed to God, revealed by Him to His servants. Each name and definition brought to mind pieces of our journey with Luke and I thought I'd get them down in black and white.

1. Jehovah-jireh: The Lord Who Provides (revealed to Abraham, Genesis 22)
After 8 days in the NICU, we got to bring our new baby boy home. Along with him came a baby scale and the instructions to weigh him every couple of days, at the same time of day. Luke was born at 7 lbs. 4 oz., dropped a bit after birth, but quickly jumped back up to 7 lbs. 3 oz at 10 days old. Over the next two weeks, he dipped again, to the high 6 pound mark. We began fortifying his breastmilk to 27 calories to help him gain.

At 4 weeks old, on a Monday morning, I undressed Luke and brought him down to the scale. 6 lbs. 9 oz. As tears fell, I called Roger at school and he quickly drove home. We called our cardiologist and asked if we could be admitted. It wasn't just his weight loss, Luke had continued to struggle with jaundice. Those home-care lights just weren't cuttin' it, as you can see in the picture below.

Dr. S. made a few phone calls and arranged a room for us on the floor at Mary Bridge Children's Hospital. An NG tube was placed and the plan was to get him going on 30-calorie continuous feeds, with 24 hour light therapy for his jaundice.

This was our first experience with anything invasive being done to Luke and Roger and I decided not to be in the room when the NG was inserted. It seemed to take an especially long time and the nurses did report a bit of trouble getting the tube in. We didn't think much of it as we were busy comforting Luke and getting situated to spend the night in the hospital room.

Later that night, we woke to Luke screaming and arching and the nurse trying to get him hooked up to a second sat monitor. Without any warning, Luke's sats had dropped 10 points, from mid-80's to mid-70's. Dr. S. was called and he drove to the hospital to assess the situation. Luke continued to scream and despite some productive coughing, his sat's did not bounce back without blow-by oxygen. Dr. S. decided he wanted Luke to be brought upstairs to the PICU. I will never forget the fear we felt walking Luke up to the ICU. We were so new to this world and my mind was frenzied with the thought of losing Luke. I even remember asking Dr. S. if Luke was going to die. He quickly assured me that he did NOT bring Luke up to the PICU for resuscitation purposes.

Once they got Luke in the PICU bed, he continued to fight and kick and arch like nobody's business. The PICU doc thought she might have seen a slight pupil dilation and ordered an MRI for the next morning. Seizures and blood clots to the brain were given to us as possible causes for Luke's severe reaction and seeming pain.

The minutes ticked by as they got Luke calm and put the nasal cannula on him. "You guys should get some sleep," they told us. There was nothing we could do for our son in that moment. We headed back downstairs to Luke's original room and were given the room for the night, even though Luke was upstairs. Roger and I slept a little, cried, prayed, and slept a little more on a tiny hospital bed, waiting for morning and the MRI results.

So what happened and how did we see the Lord provide during these trying days?

Luke's brain scan came back perfectly normal, showing no signs of clotting or seizure activity.

The Lord Provides.

The doctors' best guess at this point was that Luke aspirated after a tricky NG tube insertion and the distress on his lungs caused his sats to drop.

At this point, no one was ready to send Luke back downstairs, so he stayed put in the PICU with his supplemental oxygen and NG tube. The PICU at Mary Bridge does not have sleep-in beds for parents and Roger and I didn't feel comfortable going home to Puyallup at night. Early in the afternoon on Tuesday morning, a social worker came to offer us another sleeping situation. She told us that Mary Bridge owns several apartment units right across the street from the hospital, free-of-charge for PICU parents and that there was one available if we wanted it.

The Lord Provides.

This apartment was so much more than a roof over our heads for six nights. It was a tangible outpouring of God's provision. After long days in the hospital, we had a quiet, comfortable place to sleep, within 3 minutes of our son. It sounds strange, but it was a refuge.

Luke was moved back to the floor after two days in the PICU and would stay there another five days, until being transported up to Children's for his first heart surgery. Although the Mary Bridge apartments are reserved for parents with children in the PICU, the unit we were staying in remained available for our entire stay.

The Lord Provides.

As I type those three words repeatedly, the truth that the Lord provides — then, now, and beyond — settles into my heart and helps ease my anxiety.

Monday, June 8, 2009

The cat came back

The cat came back the very next day
The cat came back, thought he was a goner
But the cat came back
Just couldn't stay away-ay-ay-ay

I've had that tune in my head since Friday night, when our cat, missing for NINE days, returned to us.

You would guess that perhaps he had been out in the woods, or picked up and taken to a shelter. Nine days is a long time for a basically indoor cat to be gone. Roger and I had said our good-byes and even began shopping for a new living room chair (since our current one looks like it had a run-in with a shredder.)

On Friday night, nine days after we found Malcolm missing, Rog was out behind our house when he heard a soft mewing. I heard him come running up the stairs saying, "I think I found Malcolm!" I jumped out of bed to the crawl-space vent and sure enough, Malcolm was crying. The only access to our crawl space is inside our house, so we opened the access door (which during the nine days we had opened two or three times thinking somehow he had gotten stuck down there) and there he was.

We have no idea why he didn't come out those other times we had opened that crawl-space door, or how we didn't hear him crying at any other point throughout the week. What we do know is that the cat came back ... a little dehydrated, a lot skinnier, but not too worse for the wear, considering.

Luke couldn't be happier. "Malcolm came HOOOME! Malcolm woke up!" he has told us many times since Friday night. Now if anyone has a fool-proof way to keep a cat from shredding a fabric chair, our ending would be even happier.

Malcolm at 8 weeks, clueless to the adventures that lie ahead of him! My sweet husband surprised me with him back in 2004. Now that is love!

Friday, June 5, 2009

Where are you going, Time?

Luke is almost 29 months old. That is one month shy of the official 2 1/2. For the first 18 months of Luke's life, I could not relate to people who said they couldn't believe how fast their kids grew up. Luke's first 18 months felt at times like 18 years. Two open heart surgeries, 50-some days in the hospital, feeding tubes, terrible reflux, doctor's appointments do not add up to flying time. Then something strange happened. Today, as I watched Luke swing on a "big-kid" swing, looking like an old pro, it struck me that all those parents were on to something: Luke is growing up on me.

All day we hear, "Luke do it all by hisself." He is wearing Croc's. He is walking up and down stairs without holding on to anything for support. He has opinions and likes to share them (boy does he like to share them), and we see his sense of humor developing. Don't be fooled by his diapers and footed jammies. He is growing up on us.

Tuesday, June 2, 2009

Like father...

Like father ...

Like son ...


So we ordered Luke this medical kit to hopefully help his next cardiology appointment (June 26th) go smoothly. Not that Dr. S. uses tweezers, a bedpan, or forceps. Wait, he doesn't wear big blue glasses either. Oh well, it can't hurt to try, right?

He actually has showed the most interest in the stethoscope and could not look cuter listening to Daddy's heart:

And can you believe how brave he is giving himself a shot? No less a shot in the shin!