St. Louis it is!

John and I had a great visit to St. Louis last week. It was a jam-packed day of meetings, appointments and tours but a very productive day for sure. We had lengthy, critical discussions with a neonatologist, a cardiothoracic surgeon, two high-risk OBs and the CICU (cardiac intensive care unit) assistant manager (and RN) as well as being accompanied ALL DAY by our Fetal Care Coordinator, Chris, who is wonderful! She took us to each appointment, guided us on tours and answered tons of questions. She rocks!

Important things we learned during our day visiting St. Louis Children's & Barnes-Jewish...

• From the sonographer and one of the high-risk OBs... Outside of the heart defect, Baby Girl is on the small side but is growing and developing well. Yay! This is a big deal. We even got this 3-D view of her sweet face this time. Loved it. :)
• From the other high-risk OB... It is critical for me to get to 39 weeks, and they will do everything they can to get me to that point. I will be induced and deliver at 39 weeks at Barnes-Jewish in St. Louis.
• From the surgeon... He covered the "staged reconstruction" (three surgeries she will undergo in her first few years) in detail and answered all of our questions...and there were a lot. Bottom line, there are LOTS of variables when it comes to the success of the staged reconstruction of an HLHS baby's heart and the care of these babies is a unified team effort. They handle approximately 13 HLHS cases per year.
• From the neonatologist... After birth, Baby Girl will be immediately taken to the NICU at St. Louis Children's (which is connected to Barnes-Jewish) where IV med will be administered to keep the two holes in her heart open until surgery. We may or may not get to hold her before she's taken to the NICU. At the very least, we should be able to touch her and snap a photo or two. She will stay in the NICU for a few days until she is stabilized. Then she will be moved to the CICU just before her first surgery within the first week of her life. She will return to the CICU after surgery for recovery, which could last approximately four weeks.

Ultimately, we came away from our day in St. Louis feeling great about this option and decided, even without visiting Cincinnati, that St. Louis is the place for us and our sweet baby girl. In two weeks, we will return to St. Louis for another ultrasound and fetal echo, a meeting with the cardiologist and a tour of Labor & Delivery at Barnes-Jewish. We are also looking forward to taking our girls with us this time to begin to get familiar with the area and spend some time having fun in St. Louis as a family!

Thanks again for praying, dear ones. We appreciate you. God is good, and He is sustaining us!

visiting St. Louis Children's Hospital

Just wanted to send a quick update and ask for some specific prayer (again). First though, thank you SO, SO much for your outpouring of love, support and prayer for our family. We are feeling it! :)

 

Pregnancy... I am feeling good these days other than some leg pain due to severe, pregnancy-induced varicose veins. Yuck! I had them with Emily, too, but not nearly this bad (or painful). But, all in all, feeling good. Trying to soak up the last few weeks of summer break especially with my big girl.

 

Baby Girl... John and I are headed to St. Louis Wednesday for a full day of meeting with doctors, having tours and even another ultrasound. Looking forward to seeing our sweet girl again! This is a “get-to-know-you” visit for us to check things out, talk through our situation with the docs, etc. We will also be visiting Cincinnati Children’s Hospital in the next couple of weeks. We’ve pretty much narrowed it down to those two hospitals. So far, just by phone and email contact, we are very impressed with St. Louis Children’s Hospital, and we are looking forward to having some critical discussions with the neonatologist, cardiothoracic surgeon and maternal fetal medicine doctor as well as touring the facilities and meeting other staff there. Huge thank you to my sweet sister-in-law, Lucy, and family for hosting us for the night and taking our sweet girls for us all day while John and I head to St. Louis! Thank you, Luc!

 

So, prayer requests for now...

• Complete healing for Baby Girl’s heart and confirmation of that with the ultrasound tomorrow. Our God is BIG. He can do it! :)
• Safe travels to and from St. Louis.
• Good visits with doctors, staff, etc. and clarity and unity for John and I in deciding whether St. Louis is the place for us and Baby Girl...should God choose not to heal her. :)
• That we would continue to enjoy this pregnancy and not let the situation steal our joy in welcoming our sweet baby girl into this world. It’s hard to explain, but it’s a strange situation to be in with all the decision-making, planning, thinking we’re having to do. Still trusting God in all of it though.

Thank you again for the continued love, support and prayer. Wish we could express in words how grateful we are for you!

an incredible act of kindness

There's a family that's near and dear to our hearts that used to go to our church. They're near and dear to our hearts not necessarily because we get to spend a ton of time with them (wish we could more often actually), but because the kids are wonderful and the parents are wonderful...and they share incredibly closely in our values. There may also be an unspoken bond because they moved here from Tennessee, oh-so-close to my Bluegrass roots. Sweet tea and Southern draws connect people. Just sayin'. :)

So, long story short, I get a Facebook message from their sweet, sweet, sweet 16-year-old daughter last night that she has something very special to give me. She's quite crafty so I'm thinking maybe something cute she made for Baby Girl, about which I would be totally happy. Anyway, we exchanged texts and arranged to meet up this morning.

Come to find out, my sweet teenage friend aspired for a long time to be a NICU nurse. Given that, she has spent some time following babies' stories who have been/are in a NICU environment due to various conditions. Specifically, she's followed babies with HLHS, the very condition our sweet baby girl has. So, she handed me this cute bag of goodies and explained what it's all about. Wow! I was absolutely blown away. Still am really. Turns out there's this incredible organization called Sisters by Heart. Anyone can contact them to "nominate" a family who has a child that has been diagnosed with HLHS to receive a care package. My sweet friend did just that, had it delivered to her address and hand delivered it to me today. The bag/care package included what you see in the picture...swaddling blankets, a baby hospital gown, leg warmers, a Onesie, a handmade hat, hand sanitizer and cream, a journal for me, a deck of cards for John, a book for Abby and Emily, an encouraging note from said teenager's mom (that meant so much) as well as a few other things. Every item in the bag had a personalized label that explained the what and why of each item.

I cannot begin to tell you how much this care package means to us, a family in the beginning stages of navigating these choppy waters of an HLHS diagnosis. And I cannot begin to tell you how much the act of kindness means to us...such a thoughtful, God-honoring act of kindness...from one of the sweetest, most amazing teenagers I know. Talk about being the hands and feet of Jesus! From the bottom of our hearts, THANK YOU, A.G. You know who you are. ;)

life as we know it....is different

On Tuesday morning, 6/25, I went in for a somewhat routine ultrasound. Specifically, a targeted ultrasound on Baby’s heart. This ultrasound was scheduled because the routine "mid-pregnancy ultrasound" I had on 6/7 did not provide my OB with enough visual detail on Baby’s heart. It was assumed that nothing was necessarily wrong. Doc just wanted extra visual evidence that Baby’s heart looks and functions like it should, just like every other part of her sweet little body. Yes, as most of you know, during the 6/7 ultrasound we were excited to find out we are having another girl! John, Abby and I proceeded to have a blast in Orlando the following week, enjoying the sun, sand and Disney after his conference, while Emily was thoroughly loved on, and somewhat spoiled by, John’s side of the family for the week. :) After a week of recovering from vacation, I went in on 6/25 for the targeted ultrasound as scheduled. I ended up going by myself as John had to stay home with the girls because Abby was pretty sick with what we think may have been food poisoning.

 

After an in-depth, targeted ultrasound on Baby’s heart, I left the hospital with the difficult news that our sweet baby girl has a rare, serious congenital heart defect. Specifically, she was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). To say the following 24 hours were difficult is putting it lightly. Though I have truly felt God preparing me for something this entire pregnancy, nothing could have fully prepared me to hear the news that our sweet babe has a serious heart defect. After the initial diagnosis, we were referred to the Congenital Heart Center at Children’s Hospital of Illinois in Peoria for a fetal echo. The fetal echo on Thursday, 6/27, confirmed the HLHS diagnosis.

 

In summary, HLHS is a rare disease affecting 1 in approximately 4,000 babies born each year. It is a condition in which the left ventricle, the one that pumps blood back out to the body, is severely underdeveloped. Babies diagnosed with this condition cannot survive after birth without immediate medical attention, including open heart surgery within a week after birth and two more planned heart surgeries within Baby’s first three years. If you’d like to know more about HLHS, check out this site. Or, if you want the full, detailed explanation of what HLHS is and what we’ll be facing if God chooses not to heal our sweet babe, check out this great series of videos.

 

Also, we'd love for you to join us on this journey through prayer and praise...

• Praise for Baby’s overall health - All indications are that, other than the HLHS, she is healthy. Praise God! Baby is "safe" in utero as long as she continues to develop and grow as she should and as long as I go full term, which I should.  
• Pray for healing - John and I completely believe God can heal our baby girl. However, we don’t know if He will choose to do so. We are praying and trusting for complete healing, and we’d love for you to join us in that prayer.
• Pray for our decision-making - Though we are trusting that God can heal her, we are also trying to be wise in planning for Baby’s critical care after birth if He chooses not to heal her. We have learned more about the function of a normal heart as well as an HLHS heart than we ever wanted to know. We recently received some answers regarding insurance coverage and are now in the process of researching children’s hospitals which provide care for HLHS. Please pray for clarity and unity for John and me as we talk/think/pray through all of this.

So, how are we doing? Remarkably well, honestly. As I said, the 24 hours following the news were quite difficult as we processed things together and separately. However, God’s grace and mercy are (once again) amazing. Praise Him! Ultimately, we know He has our baby girl in His hands, and there’s no better place for her to be. We know that He has allowed this trial in our lives for a reason (or more than one reason). We know that, upon hearing the news two weeks ago of Baby’s heart defect, our lives will never be the same, no matter what God chooses to do. And we know that God is already at work and is using this trial for good. Our number one desire in all of this is that we glorify Him as we step down this difficult road and that we draw closer to Him individually, as a couple and as a family.

 

Thank you so much for partnering with us in prayer and praise as we continue this journey!

"Be joyful in hope, patient in affliction and faithful in prayer." --Romans 12:12