A Sweet Reunion and (ugh) Another Specialist for Luke
As the new specialist for Luke said last week, “it’s good news, bad news.”
Let’s start with the good news.
On Monday morning, I had my 20-week high-risk OB appointment with my maternal fetal medicine doctor. We had Dr. H during my pregnancy with Luke so he is no stranger to my history. He was, however, a stranger to the baby I was carrying all those weeks. Finally, he and Luke met. I cannot begin to tell you the emotions that ran through my heart in that moment. Dr. H and Luke share the name Timothy and that was definitely on purpose.
I wish you could’ve seen the doctor’s face when we told him. “That’s a mighty fine name, young man,” he said. I happen to agree. If you’re new to the blog, you may not recall that the day Luke was born, we were going back and forth on finalizing the boy name. Scott opened up his copy of the Magnificat (the fancy name for the book that has all the readings for daily and weekend Masses) and discovered that the readings for the day were from the books of Luke and Timothy. And, thus, the name was born.
Back to the reunion. While there was some anxiousness about the visit, I was really at peace. As Dr. H began the ultrasound scan, much of our life from four years ago came flooding back. But, instead of me having horrific flashbacks, I was comforted by the soft cadence of the doctor’s voice. “Heart, oh, looks good. There’s the four chambers. Beating nicely,” he said aloud. “Nose bone, I like that. Looks good and solid. Excellent, the lips are formed perfectly. No sign of a cleft,” he continued. It was as if his thoughts were spoken aloud. Medical lingo rolled off his tongue as he glided the wand across my belly, checking all the major organs, limbs and placenta. Scott grabbed my hand, the technician standing beside the doctor smiled and Luke glanced up from his lap, pointed to the TV monitor and said, “Hi baby!”
It was all just so…beautiful.
And in that moment I felt God’s grace. Dr. H leaned back in his chair, crossed his arms and said, “This looks like one healthy baby.” Music to our ears. And then I just couldn’t help myself. The thank you’s came rolling out. I choked up once, but powered through. The thing is, maternal fetal medicine doctors aren’t usually the bearers of good news. Their day is typically hard conversation after hard conversation. We’ve been there. But on that day, we were the bright spot. The shining example that miracles happen. And, when I caught Dr. H’s eye, as he admired Luke, I felt blessed. Blessed that God put this man in our life, to guide us, to inform us, to be a voice of certainty and honesty when we needed it most.
The world needs more doctors like him.
As we shared Luke’s shenanigans over the last four years, I could see the reality and gravity of his journey register in Dr. H’s eyes. He knew, intimately, what those hurdles entailed. And then he admired Luke and couldn’t stop smiling. It was incredibly affirming to know that we had survived. And survived with grace, to boot. That kind of certainty only comes from above.
We left that morning with an increased sense of awe at what had just happened. It was surreal, really. This was the place that had once held so much fear and now it was filled with hope. I’ll head back for two more visits, one high-res scan of the baby’s heart in four weeks and then another growth scan in my third trimester. “Here’s to a boring pregnancy,” the doctor said.
A to the men.
And now for the not so fun news.
Luke officially has a new specialist. I’ve been increasingly worried about Luke’s walking pattern. In fact, we’ve seen three different orthopedic surgeons because I just couldn’t shake that something wasn’t quite right. When our last two orthos said to take him out of his SMOs (foot braces), I did so with great hesitation. It just didn’t sit well with me.
In a stroke of ‘thank you Jesus’ a good friend, no stranger to the NICU trenches, called and told me about a new specialist her son was seeing. “He’s crazy awesome,” were here exact words. She’s a nurse and a bit of a tiger mom like myself, so I knew that when she said this guy was golden, he was.
We visited with our new specialist, physical medicine, last Friday. Y’all. Y’ALL. I learned more in 45 minutes with Dr. W than I’ve learned in hours and hours and freaking hours with orthopedic surgeons. It was liberating and maddening all at the same time. I almost walked over to the ortho office and let them have it.
All I know is this, I will never darken the doors of another Austin- or Houston-based orthopedic surgeon EVER AGAIN. In fact, I left the visit infuriated with what they had missed. It seems as if Luke’s femur bone, in both legs, is moderately twisted to the outside. His hip bones are located exactly where they need to be, but his feet are taking the brunt of that ill-formed femur. What that means is when we walks, he lands incorrectly on his feet. And, if not treated, he will most definitely need foot surgery. But, ultimately that is just the symptom of the problem. So, all these doctors that prescribed SMOs never thought to look up and make the connection. They were treating the symptom, not the cause.
And of course the ideal time to reform the bone is at 18 months of age. By age four, the bone is mostly formed and will never return to its normal position. At this point, we have two options. The first? Movement. We can continue with physical therapy on a semi-regular basis and insert a different brace around his feet to ensure his heel bone and arch hit the ground at the right position. It’s possible that could correct the femurs enough that he would either skip surgery or be a lifelong foot brace wearer. The second? Surgery. For the freaking love. At age 8 or 9, we would do a planned break to both of his femurs and reset the bone. Doesn’t that sound awesome?
For now, we’ve decided to focus on movement and bracing and then at age 8, we’ll tackle surgery, if necessary.
I could go on and on with my crazy mad rant with our previous doctors but I know that it won’t do any good. What’s done is done. In the process I’ve learned to always trust my instinct (and to have awesome friends like Bea who always have my back). After I got my tears out, I put on my big girl undies and now we’re tackling the next race.
Luke. That kid always has a surprise up his sleeve.
OH, I’m so sorry. How frustrating. I’ve had similar experiences (in my case some medical, but more developmental) where hindsight is 20/20 regarding things that specialists have missed and I should have been more aggressive about pursuing. Prayers that he will be able to avoid surgery. And I’m so happy about your experience with the perinatologist.
Praising God for your good news from MFM! Hallelujah! And will be praying for your sweet Luke. How frustrating… So glad you know THE Great Physician – and trusting Him with this, too!
Oh, Luke’s news is so frustrating and must have been difficult news for you to hear, Kathryn. You all are in my prayers. Thank God the baby looks healthy. What a blessing.
Praise God for the good news on #6! And, praise God for your instincts about Luke and for that friend who pointed you to the new specialist! Luke (and you) have overcome so much; this is sure to be the next victory!
God bless you all!
V
I know well the anxiety that comes with that visit to the maternal fetal medicine doctor. After not one, but two, devastating conversations with ours at 16 weeks, I was more than happy to never darken his door again. God indeed works in mysterious ways, and sometimes not very comprehensible. So glad your visit was a positive one, and will continue to pray that your remaining weeks of pregnancy are filled with nothing but pure joy.
Teared up reading your GREAT news from MFM! I can’t imagine the sweet relief you felt. Prayers for your Luke!!
The only truly bad experience we’ve ever had was with an orthopedist. What is it with these guys?! Our experience was so horrible that we actually reported him to the hospital. Grrr….Anyway, so glad baby #6 is doing well and praying Luke’s leg problems resolve without surgery. Good for you for the follow-through! I have an adult cousin whose parents didn’t get the news nearly early enough and his care included two brutal surgeries in adulthood. So the silver lining is that, even if Luke does need surgery, it won’t be nearly what an adult would endure. This is small consolation, I’m sure, but offered up to you as a reminder of how blessed your son is to have your instincts!
That is amazing insight from the physical medicine dr. I have a bulging disc in my neck from a stupid snowboarding tipover in my 20’s (mothers! Don’t let your kids grow up to be snowboarders!). I’m managing the problem well right now with resistance exercise and massage, but for a while I was seeing a fabulous physical therapist who specialized in women’s skeletal issues. I had originally seen orthopedists for my problem and shared that I didn’t find them to be terribly helpful. She said, “well that’s not surprising as orthopedists are surgeons, if you need a surgeon then they are great, otherwise they can’t offer much.” Your experience with Luke reminds me of this.
And, I don’t know if this makes you feel better, but thanks to my weekend warrior experiences with sports, I’ve been through both bone breaks and soft tissue tears. The idea of a well-place fracture of the femurs, which will heal quickly and cleanly, to resolve decades of future wear and tear on knees, ankles, and foot joints, actually sounds like a decent tradeoff. I hope it’s not needed though. Thank you for sharing this incredible week!
oh, and you should totally write a letter to the former ortho’s explaining your new info. They need to know what they’ve missed! Even something short!
Kathryn, I’m so happy to hear that you your littlest one is healthy and strong. Yes, those boring pregnancies are the best, aren’t they?? As for Luke, oh boy, you should be mad!! A few years ago, we switched PCP’s and the first time I took our now 9 year old George in for a check up (he was 2 at the time), the doc told me he had a profound heart murmur, and that he couldn’t believe the previous doctor missed it. To say that I was mad is an understatement. George has been to a cardiologist every year since then, and will eventually have to have heart surgery, which is terribly frightening. Thank God for the new team you have to help you. I can’t imagine what the days ahead will hold, but I will be praying for Luke and for you and Scott as well. You can count on that!!
When it comes time for heart surgery, you call me. Promise?
So sorry to hear your news about looks. I can only imagine how frustrating this is for you all! BUT!!! Congrats on the healthy baby. That is a huge praise!
So much good and frustrating all rolled into one. Thrilled about your anatomy scan! Frustrated right along with you about all those gosh darn specialists. Sometimes finally having answers just doesn’t cut it. A big hug to you!
It is wonderful to hear the good news for baby 6. I have gone through those appts. with my second daughter through both of her pregnancies. It is daunting to say the least.
As a retired nurse, I lived for western medicine when I was practicing. I really thought people who sought out alternative medicine or options were screwy. But recently I suffered an injury to my back and hamstring and new that any ortho would immediately want to do expensive testing and surgery. So for the first time in my life in am seeing a Chiropractor. He treats the PGA golfers and I am blessed to have been put in touch with him. My sciatic nerve is encapsulated in a damaged hamstring. Getting up from a sitting position is incredibly painful and since I take care of 5 grandchildren each day, you can imagine how many times I am up and down. W are making progress because he is patient and awesome. Long story short….. Trust your instincts. My pediatrician when my girls were small believed in mother’s intuition to a fault.
You are a a great mom! Liking the above comment about the breaking be a good choice because it heals quickly and thoroughly. When done surgically the pain is minimal compared to what Luke has already experienced and it won’t have to be repeated.
Have a Merry Christmas and rest assured that God is good!!!!
I am so happy for you. Happy and relieved and crying over such a great ultrasound. I cannot wait to meet the newest Whitaker!
I love Dr. W. He is crazy awesome! Don’t beat yourself up. We know better now, so we’ll do better now. I don’t know that I could’ve handled this news before now. God’s timing is pretty dang good.
Can we at least t.p. the ortho office? Saran Wrap his car? Something?!? Please?!?
And yes, I’ll be going to confession with the not-so-funny thoughts I had about that office and doctor.
Oh I’m totally in, Bea. We could have such fun!
Oh, Bea, I heart you!
Such great news. As a close priest told me, “I can’t wait to see how God will make this work out.”
THAT, I love.