Journal

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

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

So we’ve been at the hospital for 24 hours now.  The first dose of beta blockers seemed to be somewhat effective, bringing her heart rate down for the first few hours after the medication was administered.  However, her rate started creeping back up before the next dose was due and her average heart rate was still in the 170s, which was higher than the cardiologists want to see.  They increased her dose of her beta blocker, propranolol, this morning, but from watching the monitors her rate seems to be staying consistently in the 170s-180s since then.  Millie and I will be here again tonight and see what they think of her response again tomorrow.  Millie’s been a total champ through it all, but is definitely getting sick of being poked and prodded.  Fingers crossed that we can go home tomorrow so that she can get a break and so that we can have the weekend together as a family before Daddy goes back to work on Monday 🤞🏻

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Journal entry by Erica Webb

After midnight last night, Millie’s heart rate started to come down a little bit, averaging in the 160s-170s. It isn’t quite as low as our cardiologist wanted to see, but the response to medication was good enough to get us home today.  They are sending us home with a 24 hour holter monitor to use on Tuesday before an appointment with cardiology and electrophysiology on Wednesday.  They will see if the medication continues to keep her heart rate down and do an echo to make sure the tachycardia isn’t impacting her heart function. If everything looks okay we will continue with the dose of beta blockers we are on.  If her rate climbs up at home or her heart function appears to be impacted on echo, we will be back to play with her medications again, but for now, excited to go home today! 

Journal entry by Matthew Webb

Hey all, I wanted to give more of a shout out today than an update (hopefully we will have more news tomorrow).  Today was my first day back at work which means Erica had her first day of solo duty with the 2 kiddos. On top of that when I came home from work I was feeling a bit off- just nausea and some aching here and there. Probably just tired and needing some rest which seems unfair because I am getting twice as much sleep as my wife. Anyways we are on a strict hands off Millie policy (along with the other two) due to her high susceptibility to infection and the complications it can cause. So I have been upstairs by myself laying on the floor trying to keep my germs away from everyone. I thought I would enjoy this brief R&R but I find myself sitting in silence listening to what is going on downstairs. I wish I could go and help, I mean it’s day 1, come on, but my man cold, no matter how big or small, is not worth the risk to the other 3. It makes me feel like a crappy dad and husband and I wanted to say how much I appreciate my wife. She is an incredible mother who is so compassionate and loving and it shows in how she is with are kiddos. While Harvey has been incredible with Millie, the jealousy monster has started to show. He’s having more nonsense tantrums and my wife handles it like a pro. It’s hard to master being stern while still conveying to your bug that you still love him more than anything- and she does it every single time. I am in awe of her and strive to be a tenth of the parent she is. She may read this and laugh because she probably feels like she is underwater so I will leave this with you babe- “ You are braver than you believe, stronger than you seem, smarter than you think, and loved more than you know” - Christopher Robin

Journal entry by Erica Webb

We met with the electrophysiologist today and he reviewed Millie’s holter monitor and EKG.  Although her rate wasn’t quite as low as he would have hoped, they were happy enough with the rate control to not add another med right now which I was happy to hear. We will go back every couple weeks for echos to make sure the tachycardia isn’t impacting her heart function and if at any point, there are any signs of heart failure, we will discuss adding other meds at that time.  Our doctors here are communicating with the teams in Boston to make sure everyone is on the same page in regards to her care plan.  Luckily, while the atrial tachycardia introduces some additional obstacles and potential for additional procedures down the line, it doesn’t sound like it will increase risks of her open heart surgery which I was relieved to hear.  Overall, good news at the appointment today.  

Our little girl is already proving to be the strongest person I know.  She’s a total champ at her appointments and tolerates all of the tests better than I would ever expect.  She’s also gained a whole pound since birth in just two weeks, now weighing 9 lbs 15 oz.  She is one tough cookie and I am one proud mama! 

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Journal entry by Erica Webb

Hi all,
I just want to say thank you to everyone that has reached out since we’ve been home.  I know many of you are wanting to come meet Millie and while we would love nothing more than to let everyone come and meet/hold Millie, we need to be extra careful, even more so than with a usual newborn .  If She gets a fever at all, we have been instructed to take her to the emergency room due to the risk or TET spells.  Additionally, now that she is on beta blockers, if she were to get sick and stop feeding as well, we would need to take her off of the beta blockers until she regained appetite due to the risk of hypoglycemia on these meds which would put us back in the hospital as well.  So with all that said, please understand that we are trying to be cautious in limiting visitors/not allowing people to hold/touch her, especially kids who are in daycare/school, for the time being .  It may seem extreme, but we are just trying to protect our girl the best way we know how.  Thanks for your understanding and continued support! We can’t wait until you can all finally meet her without limitations! 

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Journal entry by Erica Webb

We had a good morning of appointments today.  We met with Dr. Bezzerrides, her Boston electrophysiologist, for the first time and we loved him.  He isincredibly smart and personable, great with the kiddos,  and has a great understanding of cardiogenetics (which makes Mama happy 😊).  He was concerned with her dose of propranolol, as it was twice the dose he usually tries and really 1.5x the max dose he uses at all, so we did not love hearing that.  Luckily, there aren’t any terrible side effects that come along with that.  With that said, he didn’t want to mess with her meds too much given that we had a bit of a hard time getting rate control to start.  We are going to try the same dose 3x a day, rather than 4x (which is lovely given that  will mean not staying up/waking up in the middle of the night to give medicine) and hope that her rate doesn’t go up too much.  If it does, we will bump back up to 4 and try to play with her medications when we come back for surgery, since we will already be admitted to the hospital then. As long as we can get rate control with medications, we won’t consider ablation for at least a few years, so that’s one piece of relief. 

In regards to her open heart surgery, we will actually be pushing that back to 6-9 months because her oxygen levels and color are so good (that’s my girl).  The reason for this is that they want her to be a bit bigger given the additional risk of needing a conduit due to her dual LAD (although they joked that she might be too big at the point with how she’s gaining weight right now: up to 12 lbs 7.5 oz at 7 weeks old, up about 3.5 lbs from birth!).  My understanding is that if they are to have to use a conduit, having her bigger at the time of surgery will give her more time before it would need replaced and she would need another operation.  But again, the hope is to avoid the conduit all together.  We are thrilled that she is doing well enough to give us this option to delay surgery but are  also somewhat ready to have this surgery behind us, so that we can get some normalcy back and stop holding our breath, so to speak. For now we will continue enjoying our sweet girl and hope her oxygen levels and color remain good enough to get our surgery out to November.  

Hopefully no more updates from us on the medical side for a bit 🤞🏻 As always, thanks for the love and support.

Journal entry by Erica Webb

We finally got our surgery date this week.  We will travel to Boston November 11th and Millie will have her pre-op work up including a sedated echo on November 12th, followed by her open heart surgery on Wednesday November 13th.  There is still a lot to figure out and having a date brings on a whole new set of anxieties, but we are happy to have a date to start planning for.  

Journal entry by Erica Webb

We had our follow up appointments this morning and all checked out okay!  We have a few things to watch and follow up on, but we were given the okay to come home.  So, we are homeward bound just in time for Thanksgiving 🦃 So many blessings to be grateful for this year, the biggest two pictured here ❤️
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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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