Family Sunday

I would say today is as close to a perfect day as you can get.

• Kids let us sleep in. 
• Bacon and eggs for breakfast. 
• Everyone made it to church and on time.
• Lunch out and the kids behaved. 
• First outing to the Sedgwick county zoo. 
• Disney on Ice without any crazy outbursts needing every princess toy. 

Marshall crowed at the roosters and growled at all the other animals while Willa looked at each animal for 5 seconds and was ready to go see another. Marshall loved seeing Mickey Mouse and loved the bubble machine. Willa's favorite act was Elsa and Anna....and sleeping beauty, and Tiana, and Belle, and Ariel, and Punzel. She couldn't pick just one!  

And with my Fitbit telling me I have over 12,000 steps for the day, I'm ready for bed!

Willa's PHight

Willa was first diagnosed with pulmonary hypertension (PH) when she was 11 months old, September 2012.  We took her to Children's Mercy in Kansas City to have her PDA valve closed by the doctor inserting a mesh spring in her heart via a heart cath that closed off the open valve.  During that heart cath the pressures in her heart were measured and that is when it was discovered that Willa had PH.  She started taking medication, sildenafil, or more popularly known as Viagra, which was first used to treat PH before the side effects were discovered.  

Fast forward to November 2014.  Willa's PH was being controlled and pressures lowered with the sildenafil.  However, her November appointment with her cardiologist showed that her pressures had doubled from her previous appointment 6 months prior.  Willa was upped to the highest dosage of her sildenafil and we were referred on to a pediatric pulmonary hypertension specialist at the Children's Hospital in Denver.

They scheduled Willa for a heart cath. A heart cath is the only way to get an accurate measurement of the pressures inside the heart.  An echocardiogram gets a good estimate but it is just an estimate.  Pediatric PH is very, very rare.  Willa has what is called idiopathic PH, meaning, there is no reason for her having the PH. Some kids have other heart or lung problems that cause PH but Willa has no other issues thankfully.  The doctors think that her PH was caused by prematurity and her lungs being underdeveloped.  We all hope as she grows she will outgrow this.  Until then, we will continue to see her cardiologist in Wichita every 3 months and see the doctors in Denver every 6-12 months.  The good news we did get from her heart cath is that her pressures have gone down since her heart cath done in 2012.

I mentioned that PH in children is very rare.  It is so rare that there are no FDA approved drugs to treat children with PH.  Willa currently is on adult medication.  I have to cut pills into 1/4 sized pieces to give her.  Her medications are very high powered drugs.  This new medication she is on is processed through the liver so she has to have a test every month before we refill the prescription to be sure her liver enzymes are not too high.  I am so grateful to have good health insurance.  My EOB statement shows this drug costs over $8,000 before insurance takes care of it!  Yikes!!

The doctor Willa sees is one of the best in the country.  He and a small group of other doctors specializing in PH are doing ongoing research to help find the right drugs to treat PH and hopefully find a cure.  There is currently no cure for PH.  There are only drugs that help treat the symptoms and help prevent further progress.

We are so fortunate that Willa is (for the most part) asymptomatic.  Someone with PH will get winded easily, may have their lips turn blue, and have fainting spells.  She does get pale if she gets going too fast or if she is really tired from a long day.  

She did so great with all the appointments in Denver and her heart cath.  She never cried, threw a fit, or got scared.  She was so incredibly brave!

She found a purple cow - "Look its purple like K-State!" she said.

We knew she was feeling better after the heart cath when she started singing along to Frozen.

Such a trooper!

To learn more about PH you can visit the PH Association website.  PH is really hard to explain so this website has some good information on how the lungs and the heart work together. We really appreciated everyone's thoughts and prayers for Willa as she went though the testing.  We are blessed to have such great supporters for Willa.

Marshall's Birth Story

So to start, my pregnancy was pretty uneventful unlike Willa's. At around 36 weeks I started having high blood pressure readings and was monitored a little more closely. I was scheduled to be induced on July 23rd at 39 weeks and 1 day just as a precaution with my high blood pressure. I was 2 cm dilated at 36 weeks and by 38 weeks I was 4 cm. Willa was born by c-section but I was trying for a VBAC this time if possible and my doctor said with me being dilated so much already I had a very good chance at being successful. We spent the weekend of July 21st-22nd with my sister in Wichita. We hung out by the pool and went to Tanganyika Wildlife Park (awesome place to visit!) to celebrate our last weekend as a family of three.

At around 4 am on the morning of July 22nd I got up to go to the bathroom and went back to bed. I was having trouble falling back asleep when I suddenly felt like a balloon popped in my stomach. I thought it was my water breaking so I woke up Mitch and called the on call OB to see if I should come in or wait a bit since I wasn't sure if my water broke or not. They told me to come on in to check things. So we called Mitch's mom to come over to the house to stay with Willa. We left the house a little before 5 am. As we got to the highway I got my first contraction. We drove on down the road and not 2 minutes later I got another one. I told Mitch he better step on it! The contractions were consistently 1-2 minutes the whole way to the hospital. I called the hospital on our way to let them know we were coming so they would be ready. We got there at 5:50 am in record time - about 50 minutes (usually a 1 hr & 15 minute drive). We were told to go to the ER and they just took their jolly time checking me in and doing paperwork. That was when I had a chance to look at a TV and noticed Princess Kate was also in labor.

They wheeled me up to the Delivery floor and checked us in to a triage room to be sure I was in labor. Ummm, yes I could have guaranteed that! I will never forget the nurse as she checked me said "Um I can't find your cervix". I about bust out laughing. Probably would have if I wasn't in so much pain. Thank goodness my doctor was already at the hospital for a scheduled c-section and she came in to check on me. She told everyone to get me to a delivery room right away. A nurse asked me if I wanted an epidural as I was wheeled down to the delivery room. I said yes! Finally some pain relief. Then I hear my doctor say there won't be time for that. OK this is not going to be fun...We got to the delivery room around 6:20 am. The nurses kept asking me if I felt like I needed to push and I kept saying no. Well, baby was stuck a bit. My doctor pushed the head a little and all of a sudden I felt it. I pushed for 10 minutes. I wish I could have a picture of Mitch's face during this part. He looked scared to death. Marshall David Hall was born at 6:35 am weighing 6 lbs 8 oz and 20 inches long. I think they were still trying to get my IV in after I had the baby. It all happened very, very fast. Poor Princess Kate was in labor for over 8 hours and mine lasted a little over 2 1/2 hours.

Later that day we were approached by one of the nurses asking if we would be willing to be interviewed since our baby shared the same birthday as Prince George. We agreed. When the news crew came in we were excited to see one of Via Christi's communications people that we worked closely with during Willa's stay in the NICU. She recognized us right away and we enjoyed visiting with her. We were shown on the local news later that day. Willa came with Mitch's mom & grandma that afternoon. Willa loved on her brother and wanted to hold him. We took Willa down to see all her friends from the NICU and they were happy to see us all. My sister was in and out most of the day and brought us a wonderful meal that night. My mom came the next day and went to Anthony to stay with us for a couple nights while we got adjusted. Here are a few pictures from the eventful day.

Such an exhausted Daddy!

My most favorite picture ever!

On the news!

Day before Marshall's birthday at Tanganiyka Park

Maternity pictures at 33 weeks if I remember correctly

Where does time go?

It's been almost 2 years now since I posted to our blog.  One of my 2015 New Years' Resolutions is to update our blog at least once each month.  I am so forgetful so this will help me remember the memories we make.  

Some things you can expect in the next few blog posts as I get caught up on what is going on - 

1. Marshall was born on July 22, 2013 and I will type out his birth story.  It is quite the story!
2. We moved! So I guess technically we are no longer the "Anthony" Halls, but it would be too much of a hassle to change the blog address so that will not change.  That was where our family started so we will leave it.
3. Willa is now 3, in preschool 2 days a week, and taking dance/tumbling classes.  She is very independent and a typical 3 year old.  Oh my she does test my patience very often!
4. Marshall is 18 months and loves anything with wheels.  Pretty sure his first word was car and then tractor. :) He loves to throw toys in the trash can and "help" feed the dog. Again, he tests our patience every day!
5. Mitch and I are still working the same jobs as we were last time I gave an update.  I enjoy my work with Harper Industries as the Assistant Controller, but have also taken on a few side gigs doing books for some people (Mitch included!  He keeps me busy with just his business!).  Mitch continues to drill water wells, set pumps, and do all that you would need to get water.  He is even working to get a new tool that would tell him where the water is!  It is pretty cool really.  I've learned so much about water and it is way more complicated than people think.  Mitch and I also still have a cow/calf operation and now that we moved we are closer to our land and animals.  We are both really enjoying living in the country. 

Well that about sums up our lives lately.  I'll go in to more detail in the future.  I'll close with the family pictures we took this year in August.  Kids are growing up fast! 

Mom & Dad update

So not every blog post gets centered around Willa.  Time for a mom & dad update.  We are both great!  Mitch and his brother, Joe really got busy last summer drilling water wells and it carried over into the fall with the mild weather.  The drought has brought on extra work that we are thankful to have, yet we would rather see moisture falling from the sky filling ponds.  This winter we were grateful to find just enough wheat pasture for the cows and were very lucky during the most recent snow storms that we only lost a handful of calves. 

In October I accepted a job with Harper Industries, a local manufacturer in Harper.  The company makes bale beds, hydraulic pump kits, large turf & vac equipment, and mowers.  You can click here to see the website.  I am the assistant controller.  I wasn't really looking to make a career change but it has been a great change.  I love being close to home every day and I don't even miss working from home.  Its nice to interact with people everyday. 

Mitch and I really haven't had any sort of vacation for over a year so in November we took the opportunity to go to Costa Rica to attend a good college friend's wedding.  It was really the first time we had left Willa.  She stayed with my parents and I think they all had a great time. 

Costa Rica was BEAUTIFUL!  I highly recommend making the trip if you have the opportunity or are looking for a getaway.  The flight from Dallas was only 3 hours and the prices are very reasonable in the country.

This was the view from our room

 

On our way to the beach

 

We took a canopy tour and that was so pretty

 

 

Weee!

 

All dressed up for the wedding

 

I didn't actually get any pictures of the wedding because we went to the beach earlier that day and my camera stopped working for some reason.  It was back up working the next day.  We had such a great time but it was easy to come back.  We were ready to see Willa again!

 

We also brought back more than we bargained for...

 

It's really hard to get a picture of her where she is standing still!

 

 

 

Hopefully you get the gist of what I'm trying to communicate - baby BOY Hall is due to arrive July 29th!  Baby looks good and I'm feeling well!

 

 

 

 

 

Willa update

It's been waaaay to long since a blog post.  Time to catch up with some updates!  Lets start with Willa's surgery.

So Willa's surgery went well.  It took most of the morning and then we were finally reunited with her after lunch.  They put the spring in the PDA valve.  The procedure took a little longer than planned because they wanted to take some extra measurements.  They discovered Willa had pulmonary hypertension (high blood pressure in her lungs).  So when she woke up from the surgery she was having a hard time keeping her oxygen saturation up.  We stayed the night in the hospital with her.  It was a long night.  She was not able to move around being hooked up to all the wires and IV's and she had oxygen tubes all over. She was a trooper though.  She did alot of cuddling with mom and dad the rest of the day and night.  We were sent home with oxygen equipment which she wore while she slept (this was a constant struggle to keep this on her face let me tell you).  She was finally allowed to get rid of the oxygen in December.  She is still on two medications which I cannot pronounce.  One is to help keep any fluid from building up around her heart and the other is for her pulmonary hypertension.  The medication for the pulmonary hypertension is actually the same thing as Viagra.  No kidding!  I guess that drug was originally developed to treat pulmonary hypertension but had some side effects for the male population that took the drug. 

 





Not quite a month after her surgery we celebrated Willa's birthday at our house.  The weather cooperated beautifully.  It was so nice outside!  Willa's first birthday theme was rainbows.  It was our way to celebrate William also!  Ever since he passed rainbows will appear in the sky out of no where and then be gone.  My sister has quite a few pictures of the rainbow appearances.  William's headstone was set just in time to celebrate their first birthdays.

 



 

Halloween came next and our little lady bug got alot of treats!

 



 

Thanksgiving was spent in Tipton and we didn't get any pictures from that holiday, but we did go eat some excellent German food at the Tipton Germanfest.  Willa also learned how to polka!

 

Would there be any question that Willa would be spoiled on her first Christmas at home?  I think Santa kept things within reason, but that doesn't mean that grandparents, aunts and uncle did!

 

She wasn't quite sure what to think of the man with the big white beard and red suit. She didn't cry though!

 

We went to a Christmas tree farm in Wichita to pick out the perfect tree.  Mitch had to do the chopping.  He says I'm too picky!

Christmas Eve pictures - I love William's angel wing ornament appearing in this one.

Christmas Eve pictures - Willa really does smile.  This was waaaay past bedtime.

Santa came!!!

 

Today Willa went in for her last synagis shot. This is the shot that help prevent her from contracting RSV during the height of the season.  RSV was especially bad this year so I am so greatful she was able to get this.  It is not a cheap shot - $90 per visit, which is once every month from November through March.  It seems like a small price to pay for her to stay out of the hospital though. 

 

Overall she is doing great.  She weighed in at 19 pounds today.  So she is stil petite for her age.  She has caught up to her actual age with all development.  She is walking all over and talking up a storm.  She says "Hi daddy"  when Mitch gets home.  One of her first words was "please".  She quickly learned that got her cookies from Grandpa Dave.  She is also very good at the word "no".  Oh boy!  I'm sure next will be the word "why".  Fun times ahead!

 





11 months and road trip

11 months!  I can't believe its been 11 months since Willa was born.  This year has flown by.  So much that I haven't updated my blog in a loooong time.  Oops!  Time really got away from me.  Willa has been keeping us busy.  She started daycare just a few weeks ago.  Grandma Mary went back to teaching at the school so this was the first time Willa was watched by someone other than family. So far she is doing great!  She learned to crawl just last week.  Baby proof the house stat!  Got it done just in time.  She of course won't come crawl to mom or dad....oh no...she wants to climb on the dog, chew on the dog toy, chew on shoe strings or chew on flip flops.  Oh boy! 

We are nearing the one year anniversary of when we found out we lost William.  It will be a hard day to remember.  Still not a day goes by when I don't think of him. 

Today we are in Kansas City preparing for Willa's heart cath in the morning.  We arrived today and went to have her go through pre-admission testing.  It was a long day of driving, meeting with doctors and getting settled in our hotel room.  Willa goes in for her surgery at 8 am tomorrow.  The nurses said we will probably be away from her for about 4 hours.  They will put a coil in her heart to close the valve that never closed when she was born.  They will also do some assessments to see how the hole in her heart is affecting the pressure in her heart.  At this point, they don't think they will fix the hole, just the valve.  Usually with a heart cath, the patient can go home the same day.  With the doctors putting in that coil, she will have to spend the night just to be sure nothing shifts.  I know we are in very good hands there.

Some good medical news for Willa - her ROP is gone!  She has been cleared and we just have to follow up once a year at the eye doctor.  She is still at a higher risk of being near sighted.

She was measured and weighed today.  She is 25 inches long and weighs 14 lbs 11 oz!  She is over double the length she was when she was born.  Here is our big girl yesterday taking her 11 month picture!