Interlude

Five weeks after Lia’s CT scan in Chicago, we finally heard back from the physician about impressions and next steps. The scan indicates that Lia’s coarctation of the aorta is very minor and does not warrant immediate correction. For now, she will have a cardiac echocardiogram and blood pressure checks done every three months in Rockford. If the coarctation does not worsen in the meantime, physicians will likely opt for a less invasive treatment later on, when Lia is a little older. This would most likely be balloon treatment (angioplasty/stent) rather than surgical correction. The scientific literature states that treatment is optimially performed before five years old before long term complications occur, so there is plenty of time to correct if the narrowing does not worsen (a possibility).

We appreciate everybody’s support and prayers through this journey so far and appreciate your ongoing prayers. The degree of Lia’s coarctation revealed on CT compared with the original echocardiogram impressions is an answer to your prayers. We have gone from “she’ll likely need surgery in the next six weeks” to “her narrowing is minor, we’ll just monitor it for now.” Thank you for praying!

Still Waiting

We are still waiting to hear back from the Lurie’s Childrens Hospital physician about Lia’s CT scan performed over four weeks ago and next steps. Thankfully the heart condition does not seem to require emergent intervention. We still are anxious for answers. Our Mercyhealth pediatric cardiologist has been wonderful as he keeps us posted on his status for reaching out to the Chicago surgeon.

Hopefully next week...

More waiting

Well we had the CAT scan two weeks ago. Now we are waiting to hear results and next steps. So, more waiting, more opportunities to look for joy. I’ve been pretty impatient with the whole insurance approval and waiting to hear back from the CAT scan. I’m still not very good at waiting.
I just finished reading a biography of someone who had major health issues, and one of the lessons he had to learn was that resting was a thing he had to actively do. I guess I’m supposed to learn that waiting is something I’ve got to actively do. I’m so thankful that Lia is growing and getting bigger and stronger and still not experiencing any symptoms related to her heart issues.
It’s just going to be a waiting and waiting game for now...

CAT scan scheduled

This Tuesday we will going to Chicago for Lia’s CT scan. After this hopefully we will hear more about surgery plans.

Waiting and Joy

We are waiting to get a call to schedule a CAT scan around Lia’s heart. The doctor in Chicago agrees with the doctor here in Rockford about the CoA, and believes it will get worse over time  if left untreated. After the CAT scan I’m guessing we’ll hear more specifically about surgery. It’s not very easy feeling like we’re stuck in limbo, waiting.
Last weekend at our church I went to a Ladies Spring event. The speaker shared about waiting, and challenged us how to wait in confidence and to wait with joy. Our confidence is in our God who is holy, perfect, all-knowing, and He loves us and Lia more than we can even imagine. The waiting with joy part is definitely more of a challenge for me. I don’t like to wait, I don’t enjoy waiting. And that’s the thing: Dawn talked about the meaning of the word enjoy — to put on joy, to enter into joy, to surround oneself with joy. And it’s not about enjoying the waiting, it’s about enjoying who we are waiting with. Jesus is right there with us, in the waiting. He is here. And that’s where the joy is. So pray for me to put on joy and to surround myself with joy, the joy of the Lord, who is our strength.

An Update

Just realized it has been over a week since we posted anything. A brief update and answer to a few questions I have been receiving.

We are still waiting to hear back from the doctors at Lurie Children’s Hospital in Chicago via Lia’s pediatric cardiologist at Mercyhealth. When I (Jeff) spoke with her doctor last week, he plans to contact Lurie’s early this week. Once we hear back, we’ll have a better idea on treatment direction and timeline.

I want to emphasize that Eliana is not sick. She is a happy and growing baby girl. The coarctation of the aorta is a condition that requires correction through surgical or balloon intervention to prevent long term detrimental effects on the heart and body. There are two extremes for the coarctation in children. First, many cases present symptoms shortly after birth- altered cardiac/respiratory function with signs of heart failure. These cases are usually corrected surgically shortly after birth. Second, many cases do not present obvious signs and are not discovered until late childhood or adolescence. I believe Lia is closely reflects this side of the coarctation spectrum and don’t believe we would have learned about the condition until much later had it not been for the Lord’s providential working by having Lia even seen by a cardiologist at three months old as a “routine” follow up to a fetal echo cardiogram performed during Danielle’s pregnancy. More about that at another time.

Thanks again for everybody’s prayers and support. We could not imagine journeying this alone.

Additional Background Information

We launched this blog site and posted about Lia’s heart concerns less than twelve hours ago on Facebook. The support and prayer response we have received has been such a great encouragement. Since this blog site has been shared by a few of our family and friends, I want to provide additional context to why we launched this blog now and what we have learned so far about Lia’s heart concerns.

We decided to share our news now, before receiving a definitive diagnosis and treatment plan for a couple of reasons. First, our family, friends, and church family know what Danielle has been through since Christmas: gallstone formation, childbirth, readmission for postpartum blood pressure issues, gallbladder removal with two subsequent ERCP GI scopes, and a couple other things. With all of that behind us now, we do not want to give the appearance that everything is now fine and life can move forward calmly when asked by others (especially at church tomorrow). We could not just smile, nod, and lie when asked about our family’s health and assumptions made that everybody is happy and healthy now. Second, our parents needed the freedom to talk about Lia’s situation and process it with others. Third, we need your prayers! Fourth, the treatment for coarctation of the aorta appears to be standard.

Even though we still wait for the results and recommendations from Lurie’s review of Lia’s echocardiogram, Lia’s pediatric cardiologist in Rockford believes that the likelihood for surgery within the next 6-8 weeks is strong. Coarctation of the aorta increases blood pressures in the upper part of the body and lowers circulation in the lower half. While Lia’s signs are not as severe as many I have read about online, she did show signs of cardiac/vascular compromise during her appointment. Upper extremity blood pressures were approximately 30 mm Hg higher than in the legs (and elevated for a 3 month old) and femoral (groin) pulses were diminished. Long term effects of this stress on the body if left uncorrected can lead to severe consequences. Treatment recommendations/standards seem to be to fix quickly after diagnosis to prevent long term complications. Two routes of treatment exist: angioplasty to open the aorta or surgery. As I study the issue, surgery appears to be the definitive treatment to correct when detected in infancy. Perhaps we are wrong and minimal treatment will be required (or delayed). If so, this will be a short-lived blog site :-). We will know more next week and will provide an update on the situation and plan.

We continue to trust in the Lord through all this. 

Now may the Lord of peace himself give you peace at all times in every way. The Lord be with you all. 

2 Thessalonians 3:16