Holiday Weekend Fun

What a fun weekend!  I love the weekends leading up to the holidays because there are always so many fun things going on.  This weekend we put up our Christmas tree, celebrated with our friends, the Withers family, had a date night and had a cookie party with the Gingerbread Crew. Whew!  It was a whirlwind, but so much fun!

Our tree

Hattie's first time jumping at Skyzone

Ninja Turtle Legos?!!  What could be better?

I wish I had a video of Hattie squealing when she opened her gift.  It was priceless!

Livia opening her soccer bag

Sophia opening her Peppa Pig toys

We had lots of happy kiddos after a morning of pancakes, jumping and presents.  Thanks Withers family for a fun day and the blessing of your friendship!

'Tis the Season to be Jolly

Each year, our friendly elf, Jolly, visits our family.  Normally he arrives on Thanksgiving weekend and brings with him a very special breakfast from the North Pole. He must've known how busy this weekend is for us because much to our surprise, he arrived this morning!  

Hattie giggled at him and Owen had a big smile on his face when he discovered that Jolly had returned. It probably helps that Jolly doesn't seem to be into health food, rather hot cocoa and powdered sugar donuts!  Jolly always brings the kids an ornament for their trees.  This year, Hattie received a little ballerina angel and Owen received a soccer player and a Cub Scout shirt ornament.  Jolly must've really missed Owen and Hattie because this year, he brought them each a Christmas book and a pair of Christmas jammies too!  It was a great morning!

Next up...watching the Macy's Thanksgiving Day Parade in our jammies and filling our Advent calendar with slips of paper containing acts of kindness that we can do for others this holiday season.  I love some of the sweet ideas that Owen has come up with so far. He has such a kind, giving spirit. 

Hattie's Healed Heart

I haven't posted much on Hattie's recovery, mainly because from the moment we got home, she seemed like her old self.  She was on Advil and Tylenol the first week she was home and that was it. She is running around, chasing Owen, eating well, just being a silly, mischievous 1 year old!  

The last two steri strips fell off last week, so we are seeing her 'zipper' for the first time.  It's looking great!  The two spots at the bottom are where the drainage tubes were inserted into her chest.

We feel blessed beyond measure that her surgery and recovery went so smoothly.  From here, she'll see the cardiologist in January and then April and if all looks good, we'll go to yearly appointments into her adulthood.

We believe in miracles!! ❤️

Doctor or Foreman?

Caught a few cute photos this morning.  Hattie had a stethoscope around her neck and tools all around her.  Will she be a doctor?  A foreman?  Only time will tell!

Then a bit later, she went over to Owen's stuff that was waiting by the door and plopped down on his bag like it was a horsie.  Maybe he won't leave if I sit on his bag!

Have a great time camping brother!  We will miss you!

Owen's First Conference

We had Owen's first conference tonight and we couldn't be more proud of this kiddo!  His teachers had wonderful things to say about him academically and socially.  They are very happy with where he is at with reading and writing.  Apparently, he is one of about 4-5 kids that are reading, so they are going to assess the class next week and start giving that group of kids a little more of a challenge when doing their daily writing.

She said he is very comfortable in his own skin and is able to play by himself but is also good joining in with a group of peers.  She said he is also respectful to adults and is a good listener.

She showed us some drawings he had done and some exercises in following directions.  Again, she had all good things to say about his abilities. 

We love Owen to bits and are always proud of him, but man, tonight, we are just on cloud 9 to hear that his teachers are as proud of him as we are.  

Just another quick proud moment tonight happened when Paul was vacuuming under Hattie's high chair.  She got scared of the noise and Owen ran over to her, sat on the floor and let her lean into his chest.  He hugged her gently and said, "It's okay Hattie, don't be scared.  Brother is here for you."  I just love how gentle and caring he is.

Follow up Appointment

We had a follow-up appointment with our cardiologist today.  We were a little nervous about how it would go given that  Hattie is so over being poked, having stickers taken off of her chest, and having people listening to her heart.  Maybe it was that she is just sick of being cooped up with us at home and this was a way to get out of the house , but she did really well!  She was pretty patient while they took her bp, weighed and measured her, and while they did the EKG.  She wasn't as patient for the echo, but still did a fairly good job.  I think it helped that they let Paul lay next to her - oh and that we let her taste a sucker for the first time!

After all of that, we met with Dr. Shanthi and she kept saying how great Hattie looks and how good of a job that Dr. Overman did on her heart.  All wonderful things to hear as parents!  We go back at 3 months and 6 months and then if all is looking good, we'll see her yearly. When Hattie is about 20 years old, they'll transition her to a cardiologist for adults.

Apparently the cardioligist at Children's, Dr. Gremmels, liked Hattie a lot and told Dr. Shanthi that he was going to keep her as a patient.  We are so lucky and blessed to have such an amazing group of doctors and nurses that not only medically do a great job with Hattie, but that genuinely seem to like her and care about her. That goes a long way with parents!

Mmmm! A sucker!

Miss Hattie was too busy walking around our room and emptying the contents of my purse onto the floor to sit up on the table so Dr. Shanthi could examine her, so Dr. Shanthi got right down on the floor and did it there.

Hattie is Happy to be Home!

We got discharged at about 10 this morning and got home around 11.  It was a little bit bittersweet saying good-bye to what was our home for the last few days.  It was a little easier because the nurses we came to know and rely on weren't there today.  So, we gave Hattie a bath, packed up our stuff and headed home.  She was so excited to see her toys, the play kitchen, and her dollies.  She walked around and looked at all of them.  She is walking more today than she was yesterday, which is good.  She ate a pretty decent sized lunch - not quite back to normal, but still, better than a few days ago. Mmmm, Nana's meatlof is WAY better than hospital food!!

From here, we just have to be extremely careful to NOT pick her up under the arms, as the sternum could pull back apart.  We have to scoop her under the bottom and support her back. We also have to be careful to not to submerge her incision during bathtime.  We will go back in to see the cardiologist on Monday for an echo and EKG.  If all looks good there, we will go every 3 months  and then the hope is once a year into her adulthood.

We'll keep writing about her progress here, but I have a feeling she'll be keeping us pretty busy now that we are at home, so probably not quite as often.  

Thank you again for all of your prayers and support.  We are confident that those prayers are what made this go so smoothly for Hattie.

We are Heading Home in the Morning

It's been a crazy day, so I am just sitting down to update now.  After Hattie's echo this morning, the doctors doing rounds came in and asked us how we felt Hattie was doing and how we felt about her going home.  We talked about our concerns and they basically told us that medically, she is doing incredibly and could go home, but that they weren't pushing us out the door and we can stay an extra day if we would feel better about it.

We spent the day getting her up walking a bit, visiting with doctors and watching videos of how to care for her incision, etc.  Before we knew it, I had to get her prescriptions from the pharmacy (she'll just be on Advil, Tylenol and a diuretic for about a week) and leave to spend the night at home with Owen.  

Miss Hattie cracked us up today!  She kept going over to the stroller and trying to get in.  She loves going for walks around the hallways.  She would do a little beauty queen wave at all of the nurses sitting at their stations.  They loved her, so that just egged her on even more.  It was the best feeling to see her sparkle come back.

She is pretty unsteady on her feet after a few days of not walking and she reverted back to crawling a lot today.  They said that is pretty normal.  She learned how to stand up in the hospital crib, so we have to be right there at all times.  (One of the reasons I haven't posted until now!) In that respect, it will be easier to be at home.  

While Paul and I were in the waiting room during surgery, a volunteer knocked on the waiting room door to tell us that he had a gift for us.  It warmed our hearts to see a framed print of all the kids and teachers from St. Ambrose standing in a field in the shape of a giant heart.  They were holding big posters that said We Love Hattie and Hattie is our Heart Warrior.  They were all trying to make hearts with their hands. It is adorable. I can't even begin to tell you how much love we have felt from our St. A's family!  The cards, texts, emails...we knew they were right there with us loving and praying for our girl because she is their girl too.

Here are a few pictures from today.

Say What!?! Home?

Hattie's nurse said that during rounds today, the doctors mentioned the possibility of her going home today or tomorrow depending on how her echo looks this morning.  They originally said 4 days is on the short end and 10 days is on the long end, but to plan for 7 days.  Today is day 3.  I guess our girl is a rockstar!  It's all of those prayers coming her way!!  She hasn't been up walking yet, so that is today's task. Having a recovering baby at the hospital is one thing, but something completely different at home!  Not sure we are quite ready!

She just got some pain meds because she was a little uncomfortable today.  But she also had a blood draw and an x-ray before 7AM, so it's been a busy morning. Next up, an echo.

She got a visit this morning from Dr. Overman, her surgeon.  Although she wasn't thrilled, he is our hero and we'll be forever grateful to him for taking such good care of our girl!!

Her Children's Cardiologist, Dr. Gremmels, also stopped by for a visit.  She gave him the stink eye too!

Zzzzzzzzzz

And she sleeps!  Hattie fell asleep around 8PM and has slept soundly most of the night.  She wasn't happy at 2:45 when her nurse was checking vitals and gave her Tylenol, but she fell back to sleep pretty quickly when he left.  Unfirtunately, the x-ray cart comes around at about 5 and having your covers peeled off and your chest x-rayed isn't a pleasant way to wake up.  Up next, blood draw from her finger since the IV from her arm that they were taking blood draws from is out now.  She is not going to love that!!

Brother!!!

Today has been filled with ups and downs.  Hattie still isn't sleeping well and she's exhausted. On the upside, it's a huge blessing to have fewer tubes and IVs to worry about it.  She is starting to be a stinker and pull at the IV that is left and the leads on her chest.  But, that means she is less groggy and feeling more like herself, so that is good.

We got to put her in a stroller for a short time this afternoon and take her for a walk around the heart floor.  We walked down to the ICU rooms to see her nurse from Friday and Saturday.  She gave her the stinkeye and wouldn't wave or smile at her!

After that, she enjoyed some Teddy Grahams and apple juice like a big girl.

She loved getting to see Owen when he and Nana and Papa came to visit! I was so glad that cold and flu visitor restrictions (no one 5 and under can be on 4th floor) hadn't been put in place yet so he could come visit.  I think it was good for him to see for himself that she is okay and seeing him was good for her wellbeing to.

Because Sometimes Close is Too Far Away

In the weeks leading up to Hattie's surgery, many people from Children's told us about the Ronald McDonald House.  My response was always the same, "Thank you, but we live close by, so we would feel guilty taking a room that a family who lives far away could use." Their response was always, "It isn't about how far away you live, it is about providing resources to all families that have a child at the hospital."  While I appreciated that, I still came into this thinking we'd just sleep in Hattie's room.

While we were in the waiting room during her surgery, a social worker came in and told us that she had scheduled us for two nights at the RM House and that it was on the third floor of the hospital.  We thought it was off-site, so we were surprised that it was just below Hattie.  She mentioned the mealtimes and encouraged us to go have a good meal.  Later that night, Hattie was in her ICU room sleeping peacefully, so we decided to go down quick for dinner. The cafeteria has limited options, so we decided to go to the RM House.

Doors in hospitals are gray or beige metal - but the door to the RM House is a beautiful wood door with stained glass. It feels so welcoming. As you open it, you feel like you are walking into the parade of homes tour - not a part of the hospital.  There are living room settings, a huge gorgeous kitchen, some workout equipment, computers, laundry services, and a pantry filled with any cooking supplies that you could ever need (and you are welcome to just take what you need if you want to cook or bake).  We were greeted by a group of volunteers from Bremer Bank that were serving a full ham dinner.  It was amazing!   The food was delicious, it felt so good to have a cold glass of milk, and the people serving it were friendly and gracious. As we ate, I saw a huge map of the Twin Cities on the wall with the words, "Sometimes Close is Still Too Far Away." Yep, I get that now and I am so grateful that people kept encouraging us to utilize their services.

We were pleasantly surprised to see that our room resembled a hotel room - nice bed, a desk, our own bathroom.  How nice to not have to use the community shower in the ICU!  They even had fresh towels and a basket of toiletries on the counter in our bathroom in case we needed anything.

The first night, Paul slept down there and I stayed with Hattie and then last night we switched.  I can't even begin to tell you how incredible it was to just have our own space to relax and sleep.  We've eaten several meals down there now and they won't accept a penny.  It's pretty amazing. Several times there have been volunteer bakers that are just there making cupcakes, cookies or pies so you can help yourself when you are hungry.

Making some Progress

Hattie girl still hasn't slept. The doctors and her surgeon just did rounds and said that she is doing really well.  They removed the two drainage tubes from her chest, took out the line for the temporary pacemaker, and removed the large IV from her neck.  I don't know if is was harder on her or on Paul and me.  That was an awful thing to have to watch her go through.  I'm not sure that we've ever heard her cry like that.  Poor kiddo!  Our hope is that maybe now that she is calm again that getting so worked up will tire her out and she'll finally give in and sleep.

In order to remove the chest tubes, they had to take the dressing off of her incision.  It's the first time we've seen it and honestly, we were pretty surprised by how good it looks.  It's about 3.5" long, but is a very clean cut. They closed it with stitches inside and steri strips on the outside.  She has three holes under it from the drainage tubes and the temp pacemaker wire that they put in just in case the heart rythyms are off once they close up the chest.  Thankfully, hers were fine and they didn't need to use it.

She has been eating well today - a few bites of scrambled egg, some blueberry muffin and some yogurt.  Later this morning, she took a few bites of banana. So that is great.

Restless Night

It was a pretty restless night for Hattie.  She didn't sleep and was pretty upset.  We tried several foods that we know she likes and she wouldn't take any of them.  She drank a small amout, but just seems uncomfortable.  At 6AM, her nusrse gave her some Morphine.  We hope it will help her sleep, but as I type this, she is still very restless, tossing back and forth in her bed, whimpering.  Please pray that Hattie gets some much needed rest today so she can continue to be strong on her recovery process.

Snuggles!

I got to hold my baby for the first time since yesterday morning before surgery!  She was wide awake and very content.  Her color looks good too. Now she's snoozing peacefully.

Moving Day!

Hattie really is having a good day.  She has been awake and alert a lot more and she has even started to eat a little bit of solid food.  You can tell that her throat is sore from her breathing tube being there yesterday because she grimaces when she swallows solid food.

She enjoyed a visit from Auntie Dawn and  Bob today.  We were pretty surprised when the nurse came in and told us that they were moving Hattie to intermediate care!  Thank you Bob and Dawn for helping us to haul all of our gear!!

We are just getting settled in in the new room.  Hattie was feeling pretty uncomfortable, so they gave her some morphine.  Now she is napping peacefully.

Starting to Get our Girl Back

We are starting to get our girl back!  She isn't smiling yet, but she is more alert when she is awake and I got a little wave.  Her nurse Kerry just removed the IV on her right arm and also her catheter.  They were hoping to remove her chest drainage tubes, but when Dr. Overman stopped by this morning, he said they have to stay until tomorrow. They also detached a lot of the tubes from the IV in her neck, which gives her a little more mobility with her head.

Overall, these changes make such a huge difference.  She can hold her blankie, take her pacifier out when she wants to, rub her tired eyes, etc. it also makes her look more like our Hattie girl!   And that is a very good thing.

Throughout the Night

Hattie did an amazing job in the night.  She took little naps and woke up about every 20-30 minutes, wanting a drink or just letting us know she wasn't excited about the tubes and wires.  She came off of her bp meds at 11PM and they removed her nasal canula at 1AM, so now we can see her beautiful face again! 

They started her at a half ounce of Pedialyte every hour and she handled it well, so they've slowly moved up to two ounces at a time, then over to milk.  Her tummy has handled that well and she just just took 3 ounces of milk. It makes her much more content that Pedialyte.

At 5, they came in to do a chest xray, then they wiped her down and changed out her bedding.  Now she is sleeping peacefully again with a tummy filled with milk. :)

Resting Somewhat Comfortably

It's almost 10pm and Hattie is resting pretty comfortably for the most part. She has discovered the IVs going into her hands (both hands are taped to little boards to keep her from pulling them out).  We had to put socks over them so her fingers couldn't pull on her other tubes. Once they removed her breathing tube, they put a nasal canula in, which is just a small tube that is taped to her cheeks and brings oxygen to her nose.  They are weening the oxygen to see how she does and then hopefully it can come out in the night tonight.  Her chest drainage tubes and catheter will possibly come out tomorrow.  Not sure about when her temporary pacemaker will come out yet.  Once she gets those out, she'll just have her IVs and her main line, which is like an IV in her neck.

She is on about 7 different meds and fluid drips intermittently, some to keep her bp low, some for pain, some to keep her calm.  They are going to work on decreasing some of them throughout the night tonight.

She wants to drink and gets really mad when she can only have an ounce at a time.  She flails around and arches her back, but then tires herself out and sleeps for awhile.  Hopefully she can get some good quality sleep.

We haven't posted photos because they aren't easy to look at, but here is one that doesn't show much - just a little girl dreaming about being able to play with her big brother again soon. ☺️

Paul and I would like to thank everyone for their support, love and prayers today. Although we aren't able respond to every message, we are seeing them and definitely feeling blessed and overwhelmed by how many people are praying for Miss Hattie!!