Home & HUGE thanks!

Two days we have been home. I can’t remember a time that I’ve been more happy to be home. We have spent our time resting, healing, and decompressing.

We had an absolutely beautiful sunrise 🌄 on the morning we left.

We were so glad to get out of there... for the second time. Having my family together again has been so wonderful. Henry is doing great. Like any time you have surgery you have good moments and bad. Traveling was rough on him. The Mickey Mouse mask lasted about 20 seconds and I tried and tried to keep it on. I used a gallon of hand sanitizer and spray to at least attempt to keep the germs away.

The reunion was great. The girls were scared to touch Henry and had lots and lots of questions. They smiled the biggest smiles I’ve seen in a long time. It sure felt good to hug and kiss my sweet girls!

We want to give our heart felt Thanks for all of the prayers, love and support. There wasn’t a minute during the last month that we didn’t feel loved. There wasn’t a minute that we didn’t feel covered in prayers. Thank you for that! Thank you for buying T-shirt’s, sending notes, gifts, asking about us, texting us, calling us, sending us messages on social media, for sending people we’ve never met that  live in Boston or work in the hospital to love and pray and care for us, for providing meals while we were gone for Rob and the girls and as I get my feet back under me, and thank you for cheering us on  Thank you from the bottom of our hearts for being Jesus to us. We are so touched and humbled by your love. 

Thank you! 

Emily’s class found a book called Henry’s Heart, they wrote Henry letters to encourage him before his big surgery!  

Emily was so excited to do this for Henry! 

The awesome ladies at Henry’s Daycare sent us this sweet message too. 

Those are just a couple examples but thank you thank you for taking the time! 

Henry is one amazing heart ❤️ warrior!  We are so proud and grateful that we get to be his family. Henry sure has a story to tell one day! 

Again, we are so grateful . Thank you for everything. 

We love you! 

Team Taylor 

Out!!

We had a great first day out of the hospital! We rested, relaxed, did laundry, and walked.

Henry is doing so great. He didn’t complain of pain much at all today. Rob left in the wee hours this morning and we went back to sleep and had a pretty good rest. I really enjoyed sleeping in a bed 🛌 after not for the last 5 days. We wandered downstairs and I drank coffee ☕️ and Henry played and had breakfast.

 I’m amazed as I meet people here in the house and hospital. I’ve met families from: Panama, Italy, China, Spain, Russia, Poland, UAE, India, Maryland, Texas, Tennessee, South Carolina and still counting. The lengths at which families go to provide their child with the best possible care is incredible. I told Rob, in my searches for our surgeon it never occurred to  me to look outside the USA for a doctor. This hospital is thought of as the best in the world (I would agree wholeheartedlyo). It’s fun to hear all the different languages and meet so many different people. These two maps show you where people who have stayed in this house alone have come from. Some

 of these families have come for a short visit. One mother and son from China in the house have been here 6 months and will have to be here at least another 6. I’m in total awe of her. Some are here on their first visit, others have been coming for years.

After I’d caught up on the laundry 🧺 we went for a walk. It was chilly but beautiful out. The fresh air and sunshine did wonders! One of the hospital therapy dogs came by the house for a visit and I think I enjoyed petting her more than the children. She was sweet and cuddly. Sure made me miss my pups!

We will have our first follow up on Thursday. Then I should know if we really have to wait until tuesday or if I can start looking for flights. We both miss home a whole lot!

Looking forward to another restful day tomorrow!

Again, thank you for your prayers, positive thoughts, messages and texts! Y’all are carrying us through!

With Love,
Jenn

Not so bad after all...

Today was rough. He was miserable and mad 😡. There was no making him happy. He didn’t want anything except to be left alone but there was lots of poking and prodding and moving and tweaking. This morning  he developed a bad rash from his knees to his neck and has been itching like crazy all day. It’s 8:30pm as I write this and he JUST got some medicine that is giving him some relief. When we got moved to the regular room, he got quarantined to the room. They’re concerned about this pneumonia and what kind of bacteria it is... something like that. Either way we weren’t allowed to leave the room and everyone that came had to have a gown and mask 😷.  I’m still not 💯 sure why that’s going on but between regular cardiac surgery stuff and the rash and pneumonia he was OVER. IT. He finally fell asleep and it looked like he was resting. The good news is that they took his chest tube out. That was pretty painful for him and while it was a major ordeal to get it out, we are glad we are down to an Iv and some pacing wires (These are wires that go into his chest to be able to pace his heart should there me an arrhythmia problem). 

A couple hours after he fell asleep  he woke up and seemed a little better. We got him up and walked him around the room and got him to play with a race track and car they brought him to play with. Somewhere in that mix he made a 180! He started smiling. He laughed when talking to Yaya and the girls on FaceTime. Talk about music to my ears! He’s been sitting up in a chair looking out the window and watching Cars3. He decided he was hungry and ate half of Rob’s pizza 🍕 instead of his dinner and drank a bunch of water.  Winning! 

What started as a rough day sure finished a great one! I’ve sure missed that smile for the last couple days! He is crushing all the goals set for him. 24-48 hours with breathing tube turned in to 6 hours. 4-5 days in CICU turned into 2. Chest tube for at least a week turned into 2 days... I can’t wait to see what he does tomorrow! 

Keep those prayers coming. They are working! God is so so good. 

For tomorrow: 

>Pray that he can be cleared to leave this room. There’s a play room two doors down and he’s dying to get in there! 

> pray for the girls and Yaya. Emily has the flu and Livvy is really missing us! I hate seeing my babies cry. Especially when I can’t get my hands on them and hold them. 

> pray for Henry’s lungs to clear up and his pain to diminish. Coughing sure is painful when you just had major surgery like this. 

>pray for continued rest and healing. 

Grateful

What a  24 hours it has been.

We kissed our baby boy goodbye aNd prayed with all our might that God would hold him close and guide the hands of the doctors. Thank you for joining us in that prayer.

Henry did amazing during surgery. It took less time than anyone thought it would.  He was on heart/lung bypass a much shorter time than anyone thought, which is great. The shorter the time on bypass the better. The surgeon was extremely pleased with how the repair went. He fixed his tricuspid valve  and repaired his atrial wall and found a hole that they hadn’t seen between his two chambers. I got to see some of the echo images last night and it’s SOOOO amazing.

Henry is in a LOT of pain. He was supposed to keep the breathing tube in 24-48 hours but we got it around around midnight last night. It was a tough fight but he did it. Talk about awful to be a part of. He can’t talk very well due to his airways being irritated as you might imagine. I did hear through a pretty pitiful whimper “mommy I have so many ouchies!”  So thankful he’s pushing through it all. He was supposed to be in CICU 4ish days but there’s talk of moving him out tonight or tomorrow! What a brave boy we have! We will see how today goes. Last night was rough. I’m so proud of him,  he’s doing what he needs to even though he’s miserable. I don’t think I could do as well.

It’s truly heartbreaking for a mama’s heart ❤️ . I’m so very glad we are on this side of it but this is certainly not for the faint of heart. I’ve wanted to scoop him up and hold him so badly but ... we Are overflowing with gratitude for all of this. Listening to the doctors, nurses, fellows, residents talk about his case really puts things in perspective.  The complexity and rarity of his CHD make it a great learning experience for everyone. This hospital is a teaching hospital (For Harvard medical school in case you didn’t know). We are so lucky 🍀 and blessed beyond measure. So grateful and are so fortunate to have the opportunity to come here and have him seen by the best of the best.

So. Prayers today that his pain will be managed. Prayers for a touch of pneumonia they think he’s got to be responsive to the antibiotics. Prayers he can keep on being brave and prayers for a restful day for all.

Thanks again for your love and support.

With a grateful ❤️
Jenn

Little things.

It’s the little things.

It’s truly the little things God does that convince me He is God. I’ve learned (specifically in the last 5 years) that God is interested in the little things. I could write for days about all the tiny things He did through my babies. This trip,  is no different.

I love snow. Love it. Ask anyone who knows me. We decided to schedule this for spring break not only bc the girls would be out of school a week but bc the fierce northeast snow season would be over (only bc we didn’t want to worry about travel delays etc bc clearly planning FOR snow would be my ideal)  But..... a couple days before we came they had the biggest snow of the year. Snow on the ground & tons of it. Thank you God for that little things.

Top floor. If you’ve ever been to a hotel with me, you know I always ask for the highest floor possible. I like to see what’s around me. I like the views. We checked in last night and they gave us a room on the top floor. It’s an old house so there’s only 3 floors but double bonus bcthe #3 is my favorite number. Thank you God for the little things.


Chinese people. It may seem odd but since our first trip to China I’ve felt most at ease around Chinese people. Give me any public situation, if I see a Chinese family my heart feels warmed. Our most profound memories are from our two trips to China. We absolutely loved China. Loved every part of it. When we eat at a Chinese restaurant or encounter Chinese people we are reminded of all those awesome memories.  We are staying at family housing for the hospital. There were a few families hanging out downstairs when we arrived. By the time we got our luggage put up we came back down and there was just one family down there. You probably see where I’m going here. They are from China. They are here from Beijing for their daughter. Again the next morning when we came down for coffee and some cereal. The only family downstairs. The family from China. Thank you God for the little things. There are actually 2 families from China and one China adoption family. Thank you God for the little things.

Rainbows 🌈. In our family we are always looking for the rainbows. This old house has stained glass in just about every window. With that plus the old glass ... on every wall 🌈🌈🌈🌈 during the day. Thank you God for the little things.

That’s just a few examples. There’s another dozen or two I could add and might in another post. Today the messages and posts and prayers upon prayers truly lifted me up. In the midst of disappointing results and sheer exhaustion God breathed something new in me. I feel good. I feel stronger.  I feel like I can trust in God’s plan a little bit more.

So we get a little downtime and I’m sure glad for it. Tomorrow is supposed to be a pretty day and be a warm 40 degrees. Snow ❄️ again on Sunday 😉

I can’t thank you enough for all of the love and support you’ve shown.

With a grateful heart!
Jenn

Ps. if there was anyone wondering how Henry is doing after his procedure today... he’s a maniac. The kid has been running full speed ahead since we left the hospital 🤦🏻‍♀️ I’ve had to hold him down and make him follow Dr’s orders!

Today

Henry is finished with all his procedures today. He is stable and snoozing away.

The Electrophysiologist tried “ everything in his bag of tricks” to make his heart go into tachycardia to find the bad electrical pathway and couldn’t find it. He said the few fast beats he got were in that area we don’t mess with. Even those didn’t last longer than a couple beats. He felt like his heart is strong and after all he tried he would be safe for surgery. The surgeon isn’t in town so I’ve no idea how he will feel about this. The EP feels like he’s safe for surgery.

It’s definitely disappointing and frustrating. I’d hoped today would end with a big step forward. At least he’s safe and his heart is strong. The upside of not fixing the problem is after 4 hours of laying flat we can go back to the place we are staying and don’t have to spend the night here.

Your prayers have definitely been felt today. Thank you!

I’ll keep you updated when I know more. We have some free time until Tuesday’s appointments. Maybe we can get out and see something if the weather cooperates.

At the very least, some stress is lifted and the rest of it Rob will be with me for. Trying to trust God’s plan. He certainly knows best.


With Love ❤️,
Jenn

Busy Day

Today was a busy day to say the least.

We started early and they worked us through their machine most of the day.  Big hospitals amaze me.  When Joe was sick and at MDAnderson, I was amazed by them too.  So much organization and so much personalization.  They know your name, they know where you're supposed to be, they help you when you look the slightest bit lost.  I'm grateful for that touch. How bout these personalized stickers? Haha. No but it’s one of those things that God does that make you know He’s got you.

Henry was a trooper.  He hung in there and was such a good boy through the whole day.  We came back to where we are staying after it was all said and done took a short rest. I love the ways he falls asleep some times. He always rubs the edge of his blanket on his lips or cheek.

After our rest Henry fixed dinner and then all the Chinese kiddos in the house gathered and played. The little girl is adopted but the young boy came from China for medical care.

Tomorrow morning we'll check in at 6:45 EST and get started.  I learned more than I wanted to know about how a heart Cathetarization and Ablation are done and all the millions of things that can go right and wrong in the process.  I'm sad i'm walking this without Rob here but trust that God is going to hold me tight and walk with me.  The procedure will take about 3.5-4 hours, but before they get started on that they'll do an MRI and 3D Echo while he's sedated.  I dont anticipate having any clue about anything before around 1:00 or so but they'll update me along the way.  What I didn't know (aside from the lengthy list of risks) is that they could possibly get in there and find the problem with his "wiring" and not be able to fix it.  It may be too close to the part of the heart that tells it how to beat.   If that's the case, they'll leave well enough alone and we'll proceed without ablation.  With all the risks and possibilities, the Dr thinks he knows right where the problem is (based on what we know about Ebstein's anomaly, "Wolff-Parkinson-White Syndrome", and the details we have about his arrythmia) and he'll be able to fix it! Praying that God will lead him right to it!

We chose Boston Children's for several reasons as you know.  Today definitely reassured me that we picked the right place.  "Best in the WORLD", "The absolute BEST", "Excellent"... those are all descriptives I heard today about the doctors we have chosen. After meeting them and talking to them, i'm confident in our choices.

So here we go...
Let’s call this alert on my phone today a good omen 🤪

Truly.  Thank you from the very bottom of our hearts for all the love, prayers, messages, email, texts, smoke signals, and carrier pigeon messages. Y’all blow me away!  Thank you so much!

With love,
Jenn

Welcome to Boston

We made it!  It was a daunting 15ish hours of travel but we made it to our destination without much excitement. So far I’m impressed with the friendliness of Boston. Can’t wait to see it in the daylight.

We started out the day at 5:00am with our ride to Dallas from Snyder then hopped on the plane.  Henry was totally fascinated by the planes ✈️ And all the excitement in the airports. The first flight you couldn’t peel him off the window but shortly after take off on the second he was out. He was a trooper and I’m so grateful that he’s such a good boy! Somehow I managed two suitcases, two backpacks, a stroller and a toddler 😂 without losing anything or anyone. I think all my years in youth ministry hauling kiddos all around the country and world prepared me for today! 😂

We found something easy to eat in the pantry here at the place we are staying. It’s definitely too cold to walk anywhere tonight. They’ve gotten about.a foot of snow the last couple days. I’m  in heaven with all the snow on the ground! We are snug in our bed and are headed to a good nights rest! 

Tomorrow is a restful, free day. Thursday starts at 7am with appointments until 4. We will definitely make the most of tomorrow! Thank you so much for all of the love, prayers, texts, messages and phone calls! Y’alls love and support is certainly carrying us through. 

With love from Boston, 

Jenn

Overwhelming.

Overwhelming. That’s the word that sums up life right now. Overwhelming in so so many ways.

Overwhelming preparation. I’m up to my eyeballs in lists. To do lists. To pack lists. To prepare lists. I’ve had a mental block lately. My mind keeps putting everything I need to do at the bottom of the list. Now we are out of time and I’m going to have to get things done.

Overwhelming fear. I think that one is self explanatory and a normal feeling when your child is approaching major surgery. I have zero control over what happens and how this story unfolds. My hope through this is in Christ alone. I know that no matter what, He is still God. I’m fearful of going without Rob. I’m fearful of Henry hurting. I’m fearful of him getting sick before we get there. I’m fearful of weather hindering our travel. I’m fearful I won’t get to the place we are staying before the staff is gone for the night. I’m fearful of how this will all affect the girls. I’m fearful that Emily won’t do well on her spelling tests without me to help her. I’m fearful that Olivia will convince Rob that she is allowed to wear a crazy girly outfit with dark red lipstick, I’m fearful that the plumbing will back up at the house like it does sometimes... and I’m fearful that I won’t get to bring my precious boy home. That’s a whole lot of fear.  Overwhelming indeed.  All of these fears though, I lay at the foot of the cross and ask for God to carry me through it.

Overwhelming support. This one has caught us off guard.  Don’t get me wrong, soooo many of you have supported us in countless ways since we first decided to adopt and boy, are we grateful! If you're reading this.  You're amazing! Thank you for loving us! It's been amazing since we knew we were headed to Boston.  A few people suggested we do a shirt fundraiser and just see if it we could do enough to help maybe just buy one plane ticket or help with housing or even a meal or two. 135 shirts and $1700 later we are blown away with the generosity of people we know and love and some we don’t even know! Y’all I can’t even... 🥰 One family, that we know through our adoption journey, gifted us with a new (amazing) stroller. Others have sent us gift cards for coffee, money, and so many friends and family have asked if they could add us to their church’s prayer list...ps. the answer to that is always yes! ;-) We are also so incredibly grateful that our good friends, and Godparents to our babies, are getting on a plane and flying to Boston to be with us while we go through this crazy adventure.  Y'all the support we've received is humbling and... well... overwhelming.  We truly know God is with us and walking us through this, because of you.

Lastly and most overwhelmingly...

Overwhelming Love.  If there were a better, more, expansive word i could use besides overwhelming i would definitely us it for the Love part.  We have continually felt God's presence through the Love y'all have shown.  Thank you for being Jesus to our family.  Thank you for caring about our adventures.  Thank you for your Love.  

Now.... I better go pack or i'll be overwhelmingly tired tomorrow night

!

With Love, Jenn