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!!

Sleeping Beauty

Paul and I have been with Hattie for about an hour or so.  She is still heavily sedated, but they are weaning her so that thy can make sure that she can breathe on her  own before they remove the breathing tube.  They've warned us that it will be rough, as she isn't going to like having the breathing tube in.  And she'll be hungry and thirsty.

Before she wakes up, I'll try to give on overview of what the surgeon told us when we met with him.  Apparently there was a little more to the story than what we were told at our last update.  After they took her off bypass, they did an echo to make sure everything looked good.  The echo showed a narrowing of the vein that they repaired.  He wanted to make sure that it was just the echo technology not being fantastic, so they ended up un-patching the ASD (hole in the atria walls) and checking on the vein repair.  In real life, it didn't look narrow, so they repatched it and took her off of bypass again.  Originally, they patched the hole with a small piece of her pericardium (tissue from the sac that surrounds the heart).  When they had to re-patch it, they used bovine pericardium.  Science is amazing, isn't it?

Please keep the prayers coming, as he will need them as she is coming out of the sedation.

Off of Bypass

Just got word that Hattie is off of bybass and that her heart is working as it should be.  We have another hour to wait while they stitch her up, put in her drainage tubes and hook up her temporary pacemaker.  Then the surgeon will come talk to us, then we'll get to see her.  They anticipate reducing the amount of narcotics around dinner time so she will start to wake up.  They have to get her to wake up so they can be sure she is able to breathe on her own before they remove her breathing tube.  They've warned us that this will be really hard for us to see because she will not like having the tube down her throat.  Keep the prayers coming - they are working. ❤️

Update from Dr. Dummels

One of the cardiologists just came in to let us know that the surgery will be going a little longer than expected due to how they are going to need to repair some of her veins.  Her CHD is called an ASD with partial anomalous pulmonary venous connection.  That means that she has a hole between the two upper atria and an important vein grew improperly because of the location of the hole.

They were hoping that by patching the hole, they'd be able to just re-route the blood coming from the vein into the left atrium where it belongs.  Unfortunately, when they got into her heart, the vein is too high up on the heart to go this route.  They now have to do a warden procedure, which means they have to disconnect it and reconnect it in a way that the blood flows where it needs to.  There are different long-term affects with this procedure that her cardiologists will watch for throughout her life, but ultimately, she still should have no limitations to the activities she can do and she shouldn't need to be on medications. 

Healing Hattie's Heart

Hattie had to be here at 6 this morning, so we headed out at about 5.  We had to wait for quite a while in the waiting room, so it was a good opportunity for us to just play and be silly with her.  It's an emotional day and tears are coming easy, so it's nice to have some giggles too.

They got her wiped down and in her hospital jammies, we signed all the consent forms and then we had about an hour to just wait.  I don't know if the anticipation of what was to come made that hour the longest hour of our lives or if this 5-6 hours in the waiting room, will be the longest hours.  The anesthesiologist, Dr. Mickalson and her surgeon, Dr. Overman stopped in to talk about the procedures and then they gave her a sedative.  They said it is equivalent to us having a few glasses of wine.  Once it kicked in, she was so relaxed and giggled when holding her hand in front of her face and at the light. Again, those little moments of giggles sure helped.  Thankfully, this anesthesiologist allows one parent to go back with her to be put under, so Paul went.  I went into the OR when she had her ear tubes done and thankfully, people had warned me about how limp they get.  Paul said she fought having the face mask put on a little bit, but it went pretty quickly.  We are extremely grateful that this went the way that it did.  The "hand-off" was something that we were dreading immensely.  We weren't guaranteed that we'd be able to go back with her, so envisioning us having to hand her over to a team of strangers while she was awake was heart-wrenching.

Once she was out from the gas, they put the IV in to give her the anesthesia that will keep her out for the duration of the surgery.  They put a scope down her throat so they could do an internal ultrasound an get a more accurate look at what they'll see when they get inside. At about 8:50, they called the family waiting room to tell us that the incision had been made and they were about to put her on bypass.  During heart surgery, they can't have blood pumping through the heart, so they essentially shut down the heart an a machine pumps the blood around the body.  She was also intubated, which means a tube is running down her throat to her lungs and a machine is circulating oxygen to her body.  This was another thing that really is scary to think about as a parent.  Right now we are sitting in a room and our baby is in the OR with machines keeping her body alive.  Ultimately, it is a means to the end, where she is fixed and healthy, but it isn't easy to think about.

These photos are ones that another family posted from their son's open heart surgery so people could see what bypass machines look like.  These computers are keeping our Hattie girl alive right now.  Thank God for technology!!

Pre-op

Hattie's pre-op appointment was a long one.  When we first arrived at Children's, they got her height and weight, checked her oxygen levels and since she was still smiling, they did her EKG (measures the electrical current and rhythms of her heart).  About two weeks ago, she did not cooperate at ALL when we were at the cardiologist and wanted nothing to do with anyone touching her or making her be still.  In fact, our cardiologist couldn't even send the results to her surgeon because they were so skewed from her screaming and wiggling.  Paul and I were pretty nervous about how pre-op would go.  We were pleasantly surprised that she rocked the EKG, giving dirty looks to the nurse only a few times.  Then we did the echo (ultrasound of her heart).  It took about 45 minutes and Paul and I were sweating when it was over from having to constantly entertain (think waving light up wands, making her stuffed puppy dance, trying to feed her a sucker, showing her apps on our phone, playing peek-a-boo, singing our ABC's, making silly faces) and holding her down.  Overall, she did okay with it given that we were asking her to lay still for 45 minutes. They were able to get the results they needed.

Next, we met with Dr. Gremmels, the Children's cardiologist.  We had about a page and a half of questions for him and he was great about answering them, drawing diagrams for us, and making friends with Hattie. She kept going over to him and patting his leg - and she may or may not've spilled milk on his pants.  Thankfully he is a daddy too!

After that, we went across the street to the hospital and had a quick bite, then met with a nurse, an anesthesiologist and had blood draws and chest x-rays.  We toured the heart floor and then had more time with the nurse.  Hattie's labs came back showing that she was positive for antibodies, which affects what type of donor blood she'll need while on bypass. It's not super common, so they had to do another blood draw to be able to run more tests.  She was spent at this point and cried really, really hard.  As parents, it's so hard to watch that and to hold her down while she is so distraught.

Six hours was a long time to be there and all three of us were exhausted and more than ready to go home.  We picked up Owen and school and then had dinner at my mom and dad's before leaving Owen there for the weekend.  One of the things that really gets me emotional is when I think about the two of them having to be apart.  They adore each other and thinking about them saying good-bye just brought me to tears every time I thought about it.  Thankfully, it went okay - one more part of this whole thing that I was dreading is now behind us.