Baby Faith is Here!🩷

Hi there everyone🩷

I really don’t know where to begin with this update since there is so much to share, but for starters ~ Baby Faith Renae is finally here!! 

As many of you know, Faith has a genetic condition that doctors have continually told us is “incompatible with life.” Before Faith was born, the doctors told us she had less than a 1% chance of surviving the pregnancy. They also said if somehow she made it until 40 weeks alive & was born, it would be a miracle if she lived longer than a few days after birth before dying… well, we’ve never been more thankful God is still in the business of miracles!🩷 Faith is 11 days old! Our sweet girlie was born on April 1st ~ it felt fitting that her birthday was April fools day since her making it full term & being born alive was a “gotcha” surprise to all the doctors!! Although the doctors continue to remind us of the short life expectancy predictions that come with Faith’s condition ~ we are praying & believing that her & Jesus have many more tricks up their sleeves to keep surprising us with health & goodness & life🩷

More about our sweet Faith girl & her life thus far🩷 

Before I share more about the last 11 days of life with Faith ~ I have to be honest with y’all… I don’t have any eloquent words or well organized thoughts… I don’t plan on editing this post for grammar or flow… I could plug it into ChatGPT & have them edit it for me, or make it sound better… but that doesn’t feel as genuine. I could give you a nicely edited post, or I could give you a messy unedited one that feels much more real & in line with our raw hearts & sleepy selves… I chose to do the latter. So, scattered as it might be, buckle up & here we go!🩷

• Days before Faith was born, she was still completely breech with her cutie little feet down. The doctors suggested a breech delivery ~ they said although it would increase the chance of long term negative effects to the Baby, they reminded me yet again that “these babies have a short life expectancy anyways and this would at least help your physical recovery as the Mom if you’re able to avoid a c-section.” Well I wasn’t having any of that! I told them my preference which always has been & always will be my heart (& Todd’s heart) which is this ~ Please do for me & my Baby whatever you would standardly recommend for any other Mother & Baby in order to follow typical protocols, maintain safety, minimize risks in every way, & preserve life🩷So next thing I knew I was getting an epidural, they would attempt a “version” where they would try to see if Baby Faith would flip, & if not, I would be heading into a c-section. I closed my eyes & said “Jesus please flip Faith around. You can do this easily! Send your angels & flip her, that the doctors might see your glory.” They had done a scan earlier that morning, prior to my prayer, & they saw she was still feet down ~ but when they went in again to do a scan right before the version to see her exact placement, they said she had moved to be transverse ~ which means she was sideways already! The doctors were shocked & said the version should be way easier now that she already did half of the work for us! I just thought to myself ~ Wow, thank you Jesus. Your angels are speedy! The doctor prepared to start the version & I kid you not, she barely touched my stomach & on THE FIRST TOUCH, Faith completely flipped! The doctors were kinda frazzled & seemed shocked at how fast it was. The attending doctor shouted & ran out to get this thing called a belly band to make sure they could keep her head down. They strapped the belly band on me & said “That was so fast! Scan & make sure she’s still head down!” They scanned to see, & she was still head down!! The one doctor said that was the fastest version she had ever performed! One of countless miracles we have added to our list🩷 (Fun side note, that doctor wasn’t the one who ended up delivering Faith, but she came to check on me & Faith every day for the next 3 days to see how we were doing! We spent time during every visit recalling the speedy version miracle & chatting about how Faith was doing each day post delivery. That doctor really made a difference in my life, & I thank God for her compassion & intentionality as often as I think of her. All of you medical people out there ~ keep up the beautiful work you are doing! You never might know who is being blessed by your love)🩷
• Delivery went great, my nurses were angels, Todd was the best as always, & from the start of induction to Baby Faith being born was only 6 hours total. Praise Jesus for a safe & speedy delivery! Yet another answered prayer to add to our list that just keeps getting longer & more beautiful everyday🩷
• Right when Faith was born, I could’ve swore the whole hospital staff was in the room with us. There were students, 3 different doctors (I think a resident, attending & the main physician?), the whole NICU team, respiratory people, all my labor & delivery nurses, & a bunch of other people who I don’t even know who they were or why they were there lol ~ it was a lot! But I’m thankful for the many medical professionals who were there to help Baby Faith🩷
• The doctors told me that it would be unlikely I’d get to hold Faith after delivery & that she would be rushed immediately to the NICU. Well another answered prayer ~ I got to hold her for a few minutes before & after the NICU team checked her (while we were still in the delivery room). Though I wouldn’t say Faith was “stable”, she was stable enough for me to hold her for a few minutes. I will forever treasure those moments holding her right after she was born ~ I was praising Jesus & weeping hysterically over the miracle of her being born alive. Todd held my arm &  Faith’s hand the whole time ~ we couldn’t even believe our sweet girlie was alive… ALIVE! Thank you Jesus. Miracle upon miracle🩷
• After performing lots of checks on Faith in the delivery room, they took her to the NICU & got her hooked up to more wires than I could even count. Todd went directly with Faith as they wheeled her down the hall, & they actually let my nurses roll my whole labor bed into the tiny NICU room to maximize my time with Faith! It was a packed house in that NICU room with all the doctors, nurses & me in my massive labor bed. But wow I was so thankful they made exceptions so I could be in the room🩷 & not only were there tons many medical people in that room ~ King Jesus was in that room with us! & so was His beautiful Princess of a Daughter, sweet Faith Renae🩷 Yet again, I was weeping🩷

• Faith’s health ~ right after birth, they had Faith hooked up to an IV through which she was getting all of her fluids & nutrition, a SiPap machine (different than CPAP) for oxygen, & countless monitors (heart rate, breathing, oxygen … etc). They took lots of blood tests to monitor her various levels & continued taking frequent blood tests for the first few days. They also had her on phototherapy lights to help her bilirubin levels. 

^ Faith under the phototherapy lights. It was like she had her own little tanning bed! The blue lights also gave spaceship vibes. 

^ The nurses got me all set up to snuggle with my girlie even with her massive mask & millions of wires! Treasuring all the snuggles🩷

• So ~ after she was born ~ we prayed, we cried, we laughed, we snuggled, & we waited to learn more about what would come next. 
• Too long of a story to share ~ but one thing that was sweet for us was Faith being born during Holy Week!! So much of our waiting, sadness, joy & answered prayers all happened during Easter weekend, which felt like a timely grace from God🩷 Specifically, much of our waiting for various things took place from Good Friday through Easter Monday ~ I was reminded of the disciples who also waited; after Jesus was crucified, they thought the story was over & that death had the final say… I have never been so thankful for the resurrection of Jesus & for the miracle of all miracles ~ Easter🩷Death does not have the final say, nor does it have the victory. For those who have put their trust in Jesus as their Lord & Savior ~ JESUS has the final say. & because of His death & resurrection, we have the hope of eternal life ~ all because of Him🩷

• For Faith’s “progress” regarding her health ~ every single day God answered so many prayers, & He kept bringing more & more healing to our girl!
• Feeding (this section shares the progression over the course of the last 11 days, each “step of progress” separated by a little “~” symbol): At first all of Faith’s nutrition & fluids were given via an IV ~ then, she was eventually able to take 5mL of milk given via her NG tube every 4 hours along with IV fluids/nutrition ~ 10mL of of milk via her NG tube every 4 hours & IV fluids/nutrition  ~ 15mL of of milk via her NG tube every 4 hours & IV fluids/nutrition ~ (this pattern continued until she got to 25mL of milk) & then they took out her IV, yay! Faith was so happy to have that thing outie haha! Thank you Jesus!  ~ they kept increasing her feeds & slowly decreasing their spacing ~ now Faith is on 35mL of milk every 3 hours with no IV, which is their goal amount for her based on her current weight! Yay!! Adding Faith’s feeding progress to our answered prayers list🩷 They have even told us she’d be ready to try a bottle based on her numbers! We’ve been advised to still wait on this in order to avoid aspirations & hold off until she gets bigger, but still exciting to hear that!
• Oxygen (this section shares the progression over the course of the last 11 days, each “step of progress” separated by a little “~” symbol): ~ here was the progression of Faith’s breathing & oxygen over the last 11 days ~ Faith was on a SiPap oxygen machine (more intense than a CPAP) on high levels of percentage of oxygen/pressure… etc ~ they decreased the percentage & pressure of her oxygen every 12 hours until she showed signs of being ready for a less intense machine called a CPAP ~ same thing, they put Faith on the higher settings of CPAP & slowly titrated until she showed signs of being ready for a less intense machine called a high flow nasal cannula ~ they continued to decrease the settings of her nasal cannula until 4 days ago when they said Faith was showing signs of being ready to take off all oxygen support & try breathing room air! ~ Faith is on her third day of breathing room air with no mask or additional oxygen supports & all of her numbers have remained stable! Adding that to the miracle list! Thank you Jesus! (Fun side note ~ when Faith first moved to breathing only room air with no mask whatsoever, it felt like our NICU room had a revolving door because the RTs (respiratory therapists) kept coming in to see her. One RT said “I came over to see the girl who apparently has a set of lungs on her!” Wow, thank you Jesus🩷 (PS that is why some of the pictures in this post shows Faith without all her face gear on! She had just moved to breathing only room air when my friend Michelle had taken those pictures, & her NG tube was out being replaced). 

• Weight ~ Faith is a tiny cutie little bean! 4 pounds 3 ounces! She’s gained weight back the last few days & she continues to gain! Pray for our girlie to keep growing big & strong🩷
• Heart ~ faith has a large hole in her heart (called a VSD) that is likely to need surgery eventually. Right now, they are continuing to monitor her & she will have frequent outpatient visits with cardiology. We are praying her heart stays “balanced” so that she can avoid the surgery altogether (which they’ve shared with us as a potential possibility)! We are also praying that if surgery becomes indicated, God will provide us with surgeons who are willing to perform the surgery, & that God gives both us & them wisdom about where & when it should take place. Pray with us🩷
• Going home ~ if Faith’s levels stay the same & continue to progress as they are right now, the plan is for us to go home from the NICU next week!! At first, Todd & I both felt overwhelmed thinking about doing Faith’s around the clock care at home without the help of our NICU nurses. Todd & I have been going through trainings about inserting NG tubes & operating feeding pumps & everything else that comes with moving home. We both felt a bit like we were in a nursing crash course to learn all these things, still while juggling so much else at the same time... We felt so overwhelmed… but now we feel excited!🩷 It is one of the greatest honors of our lives to care for our girlie for as long as God gives her life, & we have never known more of Jesus or heaven than we have in the last 10 months of having Faith Renae in our lives🩷 (We are still not 100% sure what at home care will look like ~ it sounds like it will continue to evolve, but we will start with a biweekly visiting nurse, PTs, & OTs, then go from there). 
• Fun answered prayer: we called our pediatrician to see if he was comfortable taking care of a Baby with Faith’s condition. He said an enthusiastic yes & even though Faith’s condition is rare, GET THIS, he currently has a patient with the exact same condition as Faith! Wow, thank you Jesus. Thank you for giving us a pediatrician who is excited to care for Faith & has experience with this specific condition. I’m going to run out of space in this journal for writing down all these answered prayers! I guess that is a good problem to have🩷 For if all the wonders of Jesus were written, “the world itself could not contain the books that would be written” (John 21:25)🩷
• Why, in this post, have I not specifically named Faith’s condition? Especially since I have shared it elsewhere & plan to share it again in the future? Well, this is true whether I name the condition or not ~ but this was my feeling today as I made this first official post ~ Faith Renae is not defined by a condition. She is more than a diagnosis. The names God has given to her are not the names of this condition. He calls her fearfully & wonderfully made, He calls her beloved one, He calls her a Princess, a Daughter of the King, & a Child of God. So for this post, instead of writing the name of the condition that the doctors like to *constantly* remind us of, I wanted to remind myself (& all of you) of what God’s banner over her is. His banner does not say sick, or disabled, or needy ~ His banner says loved, chosen, valued, beautiful, “Mine”🩷 Because she is first & foremost His🩷 All other names & descriptions fall to the ground at the sound of the song He sings over her all day every day. “You are precious in my eyes, & honored, & I love you” (Isaiah 43:4)🩷

• I was reflecting on what my heart has experienced these past 10 months of carrying Faith in my womb & now getting to hold her in my arms. I feel as if I have lived 100 lifetimes in just 10 short months. & specifically as it relates to my relationship with Jesus, this is what I would say ~ I cannot say that I have “held on” well to my faith during this journey… but I can say that God has held on well to me🩷 I’m thankful that the Gospel is about God being faithful even when I am faithless ~ & that I am saved not by what I can do for God, but instead because of what God did for me✝️ (Ephesians 2:8-9 & Titus 3:5)🩷 I am not necessarily suffering, because sweet Faith is not a burden but a joy. But, for the ways in which this journey feels at times like suffering ~ I cannot say I have “suffered well.” But I can say that every day I’m encouraged & anchored & inspired by the Only One who suffered well ~ He suffered perfectly actually. & as I remember His suffering for me on that Cross, I’m encouraged to keep going, keep running, keep praying, keep finding joy in each day, keep trusting Him with the unknowns of the future, & keep praising Him through all things. Not because I will ever be able to “suffer well”, but because He suffered perfectly for me✝️

My favorite Todd moments from the past 11 days🩷

• I asked Todd about how his heart was doing with everything we are walking through. He said 3 things, all of which brought me to tears ~ 1. “It has been an honor living into our vows ~ in sickness & in health, in joy & in sorrow.” 2. “I feel a new lightness & a peace I didn’t feel before, just starting a few days ago. It is the peace from God that surpasses all understanding. & I really trust God to carry us through everything that will come.” & 3. “It is such a gracious gift from God to have a Child with needs.” To which I asked Todd why that was, & he responded, “Because you depend on Jesus & prayer more than you would have otherwise. & you long for eternity & for all things to one day be made right in the way our hearts are supposed to. It helps you put your treasures not in this life, but in heaven. & there’s a lot of letting go of what you had pictured, denying your own selfishness, & trusting God’s ways are the best ways.”🥹🩷 
• “Our current trial to persevere will never compare to what Jesus did for us. But this situation does help us understand Jesus in a new way, & it makes us all the more grateful for His suffering for us on the Cross.”

Amen my love, Amen🩷

An essay called “Welcome to Holland” by Emily Perl Kingsley🩷

Todd & I have read this essay countless times, & it puts to words a bit of what it is like to find out your child has a variety of needs & for us, might also mean a “shorter” life ~ the essay is called Welcome to Holland, & it goes like this:

“I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”

In closure🩷 

So how are we doing? We love our sweet Faith girl & we thank God for the miracle of each day we get to have with her. We don’t know when Jesus will call her home to heaven… but we don’t know when He will call any of us home. & while we walk this journey called life, as we are all on our way to our True Home, we have the hope & comfort of knowing a God who will never leave us or forsake us🩷

The Gospel is good news for today & for always✝️🩷 The greatest news the world has ever known✝️🩷

Please keep praying for us. God is answering🩷

🩷Julia (& Todd)🩷

Go Fund Me Link: Faith Harris GoFundMe Link 

Worship & Videos that blessed me this week🩷

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