Journal

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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Journal entry by Erica Webb

5 days post op and we are busting out.  So incredibly proud of our baby girl and how resilient she is. We knew she was tough and strong going into this, but we had no idea she would do this well.  It wasn’t without scary moments, but overall, it couldn’t have gone better.  So happy to be out of the hospital.  Sticking in Boston for another week or so and we will be home for good! 

Journal entry by Erica Webb

5 days post op and we are busting out.  So incredibly proud of our baby girl and how resilient she is. We knew she was tough and strong going into this, but we had no idea she would do this well.  It wasn’t without scary moments, but overall, it couldn’t have gone better.  So happy to be out of the hospital.  Sticking in Boston for another week or so and we will be home for good! 

Journal entry by Erica Webb

Quiet weekend here.  Millie turned 7 months old yesterday and Harvey was able to finally see her since most of the scary tubes were gone.  She beamed at him and was just so excited to see him and he did great.  We have a sedated echo scheduled for tomorrow morning to see how things look and if all looks good, we should be out of here in the next couple days, followed by about a week stay in Boston to monitor her high heart rate.  They are monitoring to see if they think normal post-op fast heartrate or related to her previous tachycardia history.  If it’s normal post-op, we can come home with meds as is. If it’s related to her previous history, we may need to stick around to add another med in.  Either way, things are going great and we are so thrilled with her progress.  

Journal entry by Erica Webb

Miss Millie had a great night.  She was much more comfortable with the new pain med schedule and also seemed much less agitated in this setting.  Because she was calm and asleep, mom was finally able to get some sleep too.  We are making great steps forward and just had her chest tube removed.  She’s starting to look more and more like herself 💜 

Journal entry by Erica Webb

So many ups and downs these last couple days.  She’s generally been very agitated but I was able to finally start nursing her today so that’s been a huge help in comforting her at least for a bit.  She took right back to it and That was a huge win.  We've been able to remove a lot of wires (many because Millie ripped them out, the feisty thing she is, even though they weren’t actually ready to do so).  We’ve also moved to the step down unit, which I was very apprehensive about given the events of last night, but it’s much quieter over here and it seems to have eased her anxiety a bit.  he biggest win of today was getting our first post-op smiles.  I’ve missed those so much these last two days 💜 we’ve already seen that things can change very fast, but right now things seem to be moving in a positive direction and we are so grateful for that. 

Journal entry by Erica Webb

The last 24 hours have been the hardest and scariest of my life. Handing our child’s life into someone else’s hands is something I never want to do again. Millie did great in surgery and considering what she had been through, looked great after.  Everyone kept saying how well-nourished and strong she is- that’s our girl.  She started to wake up before her sedation was turned off and showed everyone just how feisty she is.   She was extubated around 12:30 and they were already tentatively talking about the possibility of moving her to step down tomorrow, but then in the most terrifying moment of my life to date, about 40 minutes later she stopped breathing.  Holding her hand I watched her turn blue and stop responding to stimuli as her eyes rolled, and her SATs plummeted, and our nurse called a code to get extra help quickly.  She was manually ventilated but never lost her pulse or blood pressure. She started breathing on her own probably 10 seconds later. She was put on bipap and lightly sedated and tolerated it well.  While It probably only lasted 10 seconds it felt 10 minutes and if tonight is any indicator, I think it will take quite some time before I can move her face or that experience out of mind.   Just a reminder from our Millie that even though she is SO mighty, this was also SO big and she needs to take her time.  You all have gotten us so far already, so please keep up the prayers.  The surgery was of course the biggest obstacle but we have a road ahead of us 💜

Journal entry by Erica Webb

Mighty Millie is out of surgery and has done great!  Dr. Emani was able to spare the valve and we get to see her in about 1.5 hours.  We will have to watch her valve over her lifetime but because we were able to spare the valve, we aren’t in the camp of knowing she will need another surgery, which we are so grateful for.  She will be intubated and not looking like herself when we see her, but we are so so grateful that she has done well so far.  Thanks for the prayers and keep them coming for her recovery 💜

Journal entry by Erica Webb

Baby girl is back in the operating room but surgery has not started yet.  Our sweet Millie was so hungry this morning but she was a champ and let her mama hold her tight.  She knew I desperately needed it.  They gave her medicine so she was asleep before we said our very tearful goodbyes and won’t remember being separated from us.  I told her be strong, be brave, and no funny business.  Thanks for the continued prayers- we will take as many as we can get 💜

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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