Journal

Journal entry by Erica Webb

Yesterday our little girl had her first cardiologist visit here in Buffalo.  When we went in her heart rate was elevated up over 200 bpm and it remained high throughout the appointment. Based on that, the cardiologist put her on a 24 hr holter monitor to see what her heart was doing throughout the day.  Today the cardiologist called to tell us that our sweet Millie has consistent atrial tachycardia with an ectopic focus. We have been admitted to the Children’s hospital in Buffalo to administer beta blockers to try to get her heart rate down.  Fingers crossed that the medications are effective so that we can take some stress off of her heart and get back home soon 🤞🏻

In better news, we had a Lactation appointment this morning and Millie is eating like a champ.  She’s gaining weight, already up to 9 lbs 3 oz, and the nurse called her mighty Millie without even knowing that was her name. My baby girl is so strong 💜

Journal entry by Erica Webb

Millie had her echo this morning and was a total champ for the entire thing, which lasted over an hour and a half.  The best news is that her pulmonary valve is of decent size and her oxygen levels have been good and therefore, she won’t need immediate surgery.  Surgery will most likely happen around 4 months, but will be a moving target based on how she is doing.  They did find an additional finding to the tetralogy of fallot on echo — dual left anterior descending coronary artery.  This may make her surgery more complicated when the  time comes and may open her up to additional surgery in the future, but we won’t know that until they open her up and see how things go.  So overall, a lot of good news today with some new information.  We are thrilled that she is doing as well as she is right now and are happy to be able to put off surgery at least for a bit.  Thanks for all the love and prayers!

Journal entry by Erica Webb

Millie Grace Luthe Webb was born yesterday, April 16, 2019 at 7:23 pm, weighing 8 lbs 15 oz and 21 in long. We were able to hold off on echo to the morning and baby girl is already so strong and brave, not crying for IVs and showing us her strong grip 

Journal entry by Erica Webb

Just a quick update for those of you who have been wondering/asking. Millie has yet to make her grand arrival.  I’ve been just casually hanging out at 2 cm dilated since the Monday that I arrived in Boston, and just got back from the doctors where I learned we are still at the same place.  The good news is that even with the contractions I’m having, Millie’s heart rate doesn’t seem to be accelerating anymore than normal and she isn’t in distress which is encouraging for whenever I do go into labor.  She’s getting her eviction notice next week and whenever she does come, we will make sure to announce it with other medical updates to follow.  In the meantime, Millie’s staying safe and cozy, and while I’m definitely getting uncomfortable, I’m more than happy to let her stay put for a few more days 💜

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Journal entry by Erica Webb

I’ve successfully made it to Boston as of Sunday night and have been welcomed by the sweetest hosts.  I stayed with my very close friends from grad school, Kim and Conor LeBlanc, Sunday and Monday night, and now am with Kelly and Ryan (Matthew’s sister and her husband) and will be here for the next week and a half. We are so lucky to have friends and family here to help us and give me some company.

I had a bunch of doctors appointments on Monday as well.  Sweet Millie is growing well, measuring over 7 lbs on ultrasound, and I got a peek at her face on 3D ultrasound.  It looks like she may have some features resembling our little man which was exciting to see.  I am slightly dilated at this point, so just doing everything I can to avoid going into labor before Matthew gets here.  So cross your fingers and say a little prayer that our sweet girl holds off until at least Saturday. 

I miss my boys terribly, but family at home are taking great care of them— treating Matthew to some birthday celebrations and making sure the little man is getting plenty of attention and love.  We are fortunate to have so much help ❤️

Those are the only updates to share for now... hopefully the only ones to come until at least Saturday! 

P.S. happy birthday Matthew 😘

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Journal entry by Erica Webb

We had our full day of doctors appointments and have a plan for some things moving forward.  I will be temporarily relocating to Boston starting March 24th (~36.5 weeks) to hopefully ensure that when I go into labor I am in Boston.  Matthew and Harvey will join me shortly after and we will all be there until Millie is born, sometime before my due date 4/16.  Once she is born, the doctors will monitor her oxygen levels to determine if surgery is needed before she will be discharged or if we are able to come home and return at a few months of age for her open heart surgery.  Those decisions will ultimately be what impact our length of stay in Boston.  

Journal entry by Erica Webb

This journey has already changed our family so much and it’s barely even started, but one thing’s for sure— we already love this girl so much and are ready to love and support her in every way we can ❤️ #chdawareness #1in110 #chdfamily #mightymillie #onetoughcookie #mamawebbstitches

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Journal entry by Erica Webb

We are so incredibly thankful for everyone who has kept our sweet little one in their thoughts and prayers, and shared their love and support in the past month.  With that, we wanted to let you know exactly who you are praying for — Our “strong and determined” little fighter, Millie, will be joining our family in a few short months. With so much love surrounding her, she is sure to be one tough cookie 💗💜💗

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#sweetbabygirl #milliegrace #onetoughcookie #webbfamilyof4

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Journal entry by Erica Webb

With this pregnancy, we have dreamed about all of the exciting things to come for our second little one.  More than anything, we have hoped for a happy and healthy baby.  Unfortunately, we recently learned that our sweet baby has tachycardia and a congenital heart defect, tetralogy of fallot, that will require open heart surgery within months of being born.  With this news, our dreams have changed for this baby.  While we still hope they are happy and healthy, with many exciting things to come, we now dream more than anything that they are a strong, brave, little fighter. That they are determined, fierce, and courageous.  That they know they are loved beyond measure and that they have parents, family, and friends that will fight endlessly for them.  That our hearts beat for them always ❤️❤️ We’ve been struggling with whether to share this news publicly or not, but at the end of the day figure the more prayers there are out there for our little one the better.  This holiday season we are thankful for your love and support, the blessing of our amazing kiddo, our sweet baby on the way, and the strength and knowledge to protect and fight for our family.  May we all find joy in the celebrations of this holiday season and cherish the ones we love ❤️

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Millie’s Story

Site created on February 19, 2019

The day before Thanksgiving we got the news at our 19 week anatomy scan that our sweet baby had a congenital heart defect, tetralogy of fallot, that would require surgery after birth.  Because there is not a pediatric cardiac surgeon in Buffalo, NY, that meant we would need to deliver outside of Buffalo to make sure that we were in capable hands should our baby need immediate surgery.   We did tons of research and decided that Boston Children’s was the best place for us to go.  Not only is their pediatric cardiology program rated 2nd in the country, but we also have friends and family there as a support system. 



Since that day, a ton has changed.  We now know that we are expecting a sweet baby GIRL and have named her Millie Grace Luthe Webb.  Millie is a German name that means “strong and determined”, which we know our girl will be.  We have traveled to Boston to meet our care team and have as much of a plan as we can at this point.  We have learned that the Boston Marathon is the day before our due date (awesome timing little lady).  And, we have found ourselves changed in so many ways— emotionally, intellectually, spiritually, socially, as spouses, and as parents. 


With all we have learned, there is still so much uncertainty.  We don’t know whether Millie will need immediate surgery or if it will be able to wait a few months — it will all depend on how she does after birth.  We don’t know how long we will need to stay in Boston. We don’t know what other challenges may come along with this diagnosis. Only time will tell, but we are trying to prepare for all possibilities.


Because there is still so much to learn, we wanted to create a space to update everyone of how Millie is doing as we have more information.  We so appreciate everyone’s well-wishes and prayers and hope to be sharing at least mostly positive news here as time goes on ❤️



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