Looking Back on 2017

Wow. What a year. In some ways, it went by fast - in other ways, it went by very slowly. It was the best year of our lives and the hardest year of our lives. There were very happy moments, full of celebration and there were very sad moments, full of heartache. I think when the clock strikes midnight, we will take a deep, deep, deeeeep breath and think, "What. A. Year."

We got a video camera at the end of 2016 to document our memories, mostly because Hattie was on her way. Our iPhones were surely going to run out of memory, and we didn't mind being those dorky parents with the video camera. It ended up being a GREAT decision. We captured some incredible memories on that video camera over the past 12 months and we put some of our favorites together in the below video. I hope you all will enjoy it as much as we have! 

BONUS video: As soon as Hattie was born, we found out something pretty unique and funny about her... she is quite the sneezer. Besides inheriting my (David) nose and smelly feet, Hattie also apparently inherited my sneeze. We were lucky enough to catch some of these sneezes and I put them all into a compilation video. Enjoy:

Hattie turned 7 months on December 24th and we celebrated a smooth six months along with her first Christmas. There's something special about Christmas time when you have a child... even if they have no idea what's going on. We went down to Austin to spend the Christmas week with Abby's family and had an incredible time! 

Hattie's deletion has become something that we don't even think about. It's something that makes Hattie who she is, but it doesn't 'define' who she is... if that makes any sense. To us, Hattie is Hattie... our beautiful little girl who likes to listen to music, play with her light up toys and stick her little legs straight up the air during bath time. We know the symptoms of her chromosomal deletion may come into effect from time to time, so while we aren't constantly thinking or worried about it, we are prepared in case something ever happens - which brings us to the other night, December 29th.

Abby and I had just knocked out a pizza (no shame), put Hattie to bed, and started watching the award-winning, classic and timeless film... Finding Dory (also no shame). Around 8:00p, Hattie's Owlet pulse-oximeter alarm went off, saying that there was a bad connection. Abby went up to re-adjust, as the Owlet will sometimes give off this alarm. Hattie wasn't squirming or kicking like she usually does when we adjust the Owlet in her crib, and when Abby turned on the lights, it was clear that something wasn't right. She called me to come upstairs and Hattie began to turn a dusky-gray color and her lips turned blue. It looked like the same apneic episode she had in June. When it was clear that this was an apneic episode or possible seizure, we called 911 and EMS was there in minutes. This seizure was a little longer than the last, and we felt confident it was, indeed, a seizure this time. She was ambulanced to the ER where they took urine and blood samples, and a nasal swab. Fortunately, during this time Hattie didn't have any further seizures. Now, for those who have never had a nasal swab (like us), it isn't a nice little swab of the nose with a Q-Tip. They shoved this Q-Tip so far up Hattie's nasal cavity that she screamed like we've never heard her scream before. It was awful. 

Long story short, they transported her again to Children's Hospital in Aurora where we found out her swab had come back positive for Influenza A (the flu). Abby and I both looked at each other and gave a sigh of relief. It may seem weird to give a sigh of relief that your 7 month old baby has the flu, but we were happy to have a definitive answer. Hattie began running a fever and it was soon evident that she was sick and the fever/flu had triggered the seizure. 

Once again, the attending doctors, residents and nurses at Children's were incredible and we were fortunately out of there in under 24 hours - flu medicine in hand and once again on our toes.

We won't let this ruin our "end of 2017" and we're so excited about going into a New Year together, as a family. As of New Year's Eve morning, Hattie's doing better and we're managing her fever. It's looking more and more like we may be in bed by 10:00 tonight - MAYBE we can keep our eyes open long enough to see midnight. We shall see.

Happy New Year everyone! Thank you for all your prayers and encouragement this year. God is good all the time - we have so much to be thankful for. 

- David & Abby

Test results, teething & Santa

After a few months of waiting, David and I received the results for our genetic testing. For those who weren't aware, we had decided to have ourselves tested to see if one of us was a carrier for this chromosomal deletion, had a deletion of our own, or possibly had an addition to a chromosome. We primarily wanted to know so we could have some closure as to what may have caused Hattie's chromosomal deletion, as well as our family planning in the future. The results came back completely normal - neither of us had any abnormalities, meaning Hattie was simply one in 100 million! It is absolutely good news that the results came back normal, but it almost seems wrong to us to celebrate or even be 'happy' about neither of us having a chromosomal abnormality. It felt wrong to think, "Oh, well that's good news because we probably won't have another baby like Hattie" because she is such a blessing to us. Even at six months, after all she has been through, we know we wouldn't have it any other way. Sure, we will probably be nervous about the next pregnancy..I'm sure any other parents would be. We have a lot of prayer and decision-making ahead of us when we decide to move forward with more children. But with the results of our individual genetic testing, we felt more closure rather than relief or happiness. Hopefully all of that makes sense. 

Moving on!

Hattie is still working hard on lifting her head up during tummy time as well as grabbing toys. She has started sitting in my lap, and supporting her own head—which is HUGE! She is still developing her own little personality, and making us laugh every day. Her giggles are contagious! She is ALMOST 12 pounds... woohoo! Not quite on the charts yet, but we are getting there! She got sick for the first time a couple weeks ago, and just was not eating. What she did eat, she would throw up almost immediately. This lasted for a few days and we were worried something else might be wrong. Well, after about four days she finally started eating well and holding everything down. Then David got sick and was puking for a solid three days. Not fun. Fortunately, Hattie gained back the weight she had lost during her sickness and is continuing to pack on weight! Bring on more leg rolls! 

I do just need to brag for a minute… because what Mom doesn’t love bragging on her little one? Hattie is SUCH A GOOD BABY. I like to think that God made her extra sweet for us, because He knows that we have had a little bit of a harder time than your average first-time parent with all of these extra Doctor’s visits (40+ in the past 6 months... not an exaggeration). She was an angel on the plane to and from Dallas, she sleeps through the night, and she rarely cries. I looked in her mouth one day, and she had two TEETH! I expected at least a few fits here and there while she was teething, but she never let us know she had two teeth breaking through her gums. No fussing, no crying... she’s a trooper. I think since she's been poked and prodded for the first few months of her life, teething is a walk in the park. We were pumped when she got her first two teeth and we're moving onto solid foods (starting with prunes). Ok, bragging is over (for now).

When we found out that Hattie was going to live a different life than we expected, we knew there would be times when we might become a little "sensitive" or even defensive. Things that people say are processed differently when you have a special baby. Things that I have said in the past about people or situations would probably trigger my Mama Bear instincts nowadays. So that being said, I've already bragged, now I need to vent a little bit. 

Before we boarded our plane, this lady at the airport commented on her size, and would just not let it go. “Oh she’s SO SMALL for her age…was she a preemie?! Wow she’s just so tiny… aw poor thing" I wanted so badly to tell her everything Hattie had been through, but I refrained. To anyone else, Hattie probably looks like a 2 month old, maybe even a newborn, especially when her eyes are closed. But then she opens those big baby blues and people are surprised - "Oh, how old is she?" It's taught us to be patient, to be kind and to be gracious. Just another way Hattie is making us better by the day. 

Wrapping up -  David and I get our first night away together this weekend—just the two of us since Hattie was born. David got us tickets to the Sean McConnell concert and a hotel in Boulder for my birthday (the guy that sings “Beautiful Rose”) -- We can’t WAIT!! It will be some much needed R&R and time together as husband and wife vs. mommy and daddy for a weekend. 

Oh! And if you haven't seen...Hattie got her picture made with Santa. She loved him.  

Love y’all!!!

-Abby

October Medical Update

September and October were crazy months for the Heasley household! Between appointments every week, a trip to PIttsburgh, a trip to Dallas, having family in town and business trips to LA - we are ready for a breather. Fortunately throughout the chaos we have received good news at all of Hattie's appointments. 

In late September, we had our first appointment with Urology - primarily to look for a reason why Hattie has been having so many Urinary Tract Infections throughout these first few months. It got to the point where we could tell when one was coming on - Hattie wouldn't have as many wet diapers, wouldn't eat and would start to throw up. Our pediatrician, Dr. Kallio, has been nothing short of amazing throughout the months. She has always been willing to take us in for a visit or help us over the phone. The hardest part about the UTIs was probably the antibiotics, which we would have to administer through a syringe. It tasted awful (we tasted it) and Hattie would gag and eventually throw up her entire bottle. Urology initially suspected that she may have Vesicoureteral Reflux, which means the urine is going back up into the kidneys from the bladder, causing infection. We went in for a procedure on September 20 where they basically administered a solution into her bladder that would glow on X-Rays and the doctor watched to see if the glow could be seen going up the ureters and into the kidney. Hattie passed with flying colors! There was no sign of reflux. Hattie - 1 , Vesicoureteral Reflux - 0.

We had another 24-hour heart monitor to do with Hattie as Cardiology was wanting to keep an eye on her heart for any more SVT (heart beating rapidly at 200 bpm+). She passed that one again (for a second time). Hattie - 2 , Supraventrical Tachycardia - 0.

The last week of September, Hattie had to go in for an EEG, or "Electroencephalogram" (say that five times fast) to see if they could detect any seizure activity in the brain. She had this done multiple times during her time in the hospital in late June. I have to say - it was pretty scary looking. They hook a ton of probes up to Hattie's head and then do multiple things to try and trigger a seizure (strobe lights, light patterns, sounds, etc.) They did this for about 2 hours. Abby slept in the room with Hattie while it was going on. After all was said and done, no seizures were detected! Hattie: 1 , Seizure Activity: 0.

Hattie was dominating, but she still had one big hurdle in front of her... gaining weight. The goal was 10 lbs. by October 16th otherwise they were going to likely have to put a G-Tube in her stomach so she could directly receive nutrients. I was in LA for work and received the best text I've received in a while - Hattie was 11 lbs. and had grown in length to 23 inches. INCREDIBLE news. Hattie - 1 , G-Tube - 0.

Another piece of news that we are awaiting are results on the genetic testing that Abby and I had done. We decided to move forward with genetic testing on our blood to see if we are a carrier of a gene or chromosomal condition that may have caused Hattie's chromosomal deletion. Through prayer and consideration, we knew we had to find out to put our minds at ease about family planning down the road. Hopefully we will hear results in the next few weeks!

Our last exciting update was a call that we got from our geneticist. We were told that another family with a daughter, a few months older than Hattie, had been diagnosed with the exact same deletion. Her name is Lucy, and her family lives in Fort Collins.. what are the odds?! Out of 55 cases reported in the entire world, who would have thought that 2 families would end up in such close proximity? We ended up getting in touch with them, and meeting at our favorite spot for lunch, Chuy's--We were excited to show some Colorado natives some real Tex Mex. We bonded with them over the hurdles that both of our families are facing. We are so excited to have friends that know exactly what we are going through, and are excited to have them in our lives. More importantly, excited that Hattie will have Lucy as a friend--Someone that was born just like her.

-Abby & David

Trip to Dallas

I’m sorry it has been a minute since we last blogged! The Heasley fam has been busy busy. We had a week of Doctor’s appointments, a trip to Dallas, and then another week of Doctor’s appointments—and then just taking care of a 4 month old and 2 fur babies in between all of that. David and I are planning to write a “medical update” here pretty soon, but in the meantime I thought I would just talk about our trip to Dallas.

Hattie and me flew to Dallas a little earlier to get together with some of my friends. Since Hattie was born in Colorado, none of my Dallas friends had met her yet, and I knew it was important for us to make our rounds.

It wasn’t our first time to fly by ourselves, so I felt a little more confident going into the airport this time. I spent 4 days packing, and read over my packing list like 30 times. So I definitely felt prepared in the packing department. When David dropped us off at the airport, I was feelin good. I felt like I was on a mission. My mission was to get through security, onto the plane, into the air, and land in Dallas with no major bumps-meltdowns-blowouts-or any other casualties. I power walked through the airport, with my stroller and diaper bag, like a boss. Definitely momming super hard. If it’s your first time flying with a baby…here are a few things that I wish I would have known before hand! (Thank you to my friend Devin for some of these tips!)

1.  Don’t forget your baby’s birth certificate (or a copy) to prove that they’re under 2 years old so they are able to ride in your lap.

2.  If you are traveling with breast milk, bring a Ziploc baggy (you’ll need to put the milk in there when you go through security)

3.  When going through security… the car seat & stroller need to go through the conveyer belt (if they fit) and you will walk through the metal detector with your babe. –Try and get in line with a nice looking person that will help you…because the airport security people usually just stand there and watch you in amusement try and fold up the stroller and yank it onto the belt with one hand while trying to hold your baby in the other…

4.  If you would like some privacy while breastfeeding/pumping, there is usually a “Mother’s Lounge” or “Nursing Room” at the airport. THIS WAS A LIFE SAVER! Just ask someone at the info desk, and they will know where to send you.

5.  When you get to your gate make sure you go to the desk to get “pink tags” for your stroller and car seat (if you are checking them at the gate).

6.   When you get on the plane…ask the flight attendant which restroom has the changing table is. The newer planes have them in both restrooms, but some of the older planes only have them in one.

Hattie was a champ on the plane- Praise the Lord! Being back in Texas was super special. Hattie got so much lovin, and it was just great to see all of our sweet friends and family.  

Here are some pictures of Hattie and all of her new friends :) 

-Abby

Becoming a Dad: Part 1

September 23, 2016 - I was on my way to a hospital in Grapevine for work when my phone rang. It was Abby and she was on the way back from a routine annual doctor's appointment. I can't remember word-for-word how the conversation went, but it was something along these lines:

Me: How was your check-up?

Abby: Fine

Me: Good!

**Awkward Pause**

Me: So... what are you doing now?

Abby: You need to come home

Me: I can't come home... I'm heading to a meeting. Is everything okay?

Abby: I just need you to come home

Me: What's wrong?

Abby: Just please come home

At this point, I'm expecting the worst: terminal illness, our dogs are dead, house broken into, Dez Bryant broke his leg, etc.

But then it hit me...

Me: I can come home if you need me to, but I need to know what's going on... wait, are you pregnant????

Abby: No... well... I just need you to come home.

There was more back and forth and considering Abby was likely in shock and is also a horrible liar... I had a pretty good guess of what was going on. 

There's a lot of pressure nowadays to make everything special, and telling your husband that you're pregnant is one of them. I know Abby had this grand plan in her head of how she would one day announce to me that we were expecting a child - a surprise perhaps, maybe a special note, whatever. But the way that I found out Abby was pregnant was perfect - a mix of shock, happiness and terror. I got home to a happy-crying wife and a positive pregnancy test. It was one of the best days of my life.

I've always been excited to be a Dad. Growing up with an incredible Dad myself probably spurred this excitement - he was always involved in sports, coaching me at home and on the field and nowadays is always there for advice on things from finance, to family, to fixing the occasional appliance. Between fathering my first child - my black labrador, Witten - and being a summer camp counselor at Pine Cove, I figured I was prepared for fatherhood. Can't be that hard, right?

Abby and I got married in February of 2016. We knew we wanted kids, but agreed to wait a few years and soak in married life for a little while. We were in the middle of moving from Texas to Colorado when we found out Abby was pregnant … and we had been married for seven months. It wasn’t the 3-4 year plan we had, but apparently when you do certain things, you can get pregnant. Who’d have thought?! Despite taking necessary 'precautions', God decided it was time for us to become parents. It wasn't long before the shock of the big news subsided and we were overjoyed that a little Heasley was on the way.

When Abby got pregnant, I had no idea what to expect. Not many of my friends had kids, and I’ve probably held about five babies in my life - in fact, Hattie’s diaper was the first diaper I ever changed, the first baby I ever burped and definitely the first person to poop on me. It started to dawn on me that I know nothing about babies. I had a million questions throughout the first trimester: How do we know everything is still ok in there? Why do strollers cost so much? Do I say “We’re Pregnant” or “Abby’s pregnant”? Why does my child look like a penguin on the ultrasound? (picture below for reference) As soon as we found out the big news, I started keeping a journal to catalog every memory we had along the way during pregnancy. I’m going to try and condense that journal into this blog.

My beautiful daughter, Hattie, in utero when she looked like a penguin and/or rotisserie chicken on the sonogram.

I quickly realized how “intense” pregnancy really is. There are a lot of words I can think of to describe pregnancy, but “intense” probably sums up everything involved. The changes going on mentally, physically, emotionally and hormonally are unbelievable. It's like the most unnatural thing and the most natural thing at the same time (I don't know if that makes sense). 

Now, if you’re thinking about having a baby, I don’t want this blog to terrify you. Just keep reading… it’s all worth it in the end. 

WHAT TO EXPECT WHEN YOUR WIFE IS EXPECTING

I’ll be the first to admit that I was clueless about pregnancy. I didn't really know what my role was throughout those nine months. Do I cook dinner for her every night? If so, do I cook healthy food or comfort food? If I cook healthy food, will she get offended because she might think I’m implying she is gaining weight? If I cook comfort food, will she get upset because she needs to eat healthy to keep the baby healthy? Should I buy her some comfortable maternity clothes? What size do I get? Am I walking on egg shells for nine months?

Being a male, I naturally want to fix everything. I tend to believe every problem has a solution. So, during the pregnancy when Abby said she wasn’t feeling well, I would search for a remedy. When Abby was upset or oddly emotional about something, I would look for a way to fix it. When Abby was feeling bad about herself, I would tell her how incredible she was. What I failed to do in all of this was just listen to her, be an ear to talk to and a shoulder to lean on. I focused too much on fixing the problems at hand rather than just being there for her. Learning to listen was one of my biggest takeaways during the pregnancy and is something I will apply to my marriage for the rest of my life. 

Fortunately for me, Abby was a pregnant rockstar. Sure, I deserved to be put in the dog pound a few times, but it happens. Guys are idiots sometimes (or most of the time). One of my worst screw-ups was during the third trimester. We were going to Costco to grab some essentials and I was really craving a hot dog. If you’re unaware, I am an admitted cheapskate and happen to be a big fan of the $1.50 hot dog and drink combo at Costco. Abby took one glance at the crowded eating area, full of people stuffing their faces with hot dogs - their carts clogging the walking lanes in between the tables. She wasn’t down for the $1.50 hot dog combo. She wanted to go get salads at ‘Mad Greens’ - a place that charges an arm and a leg for a bowl of plants and $7 for a bottle of juice. We ended up going to Mad Greens. Abby was starving as most pregnant women in their third trimester are. I was in a bad mood and acting like a 5 year old because I didn’t get my Costco hotdog like I wanted. Abby got her salad, juice and then ordered some hummus. That’s when I made a comment… THE comment. The comment you should NEVER say to a woman, especially one currently carrying your unborn child. I said “You’re going to eat ALL of that?”

I was in trouble for the remainder of the day. 

Overall, however, I like to think I was a fairly decent husband throughout the pregnancy. Abby read somewhere that pregnant women will sometimes project their frustrations onto other people or things during their pregnancy, and usually that person or thing is the husband. Fortunately for me, Abby channeled all of her frustration on my dog, Witten, the entire pregnancy. Poor guy. They say dog’s are man’s best friend and Witten definitely did me a solid. Shout out to Witten.

Witten checking out the new addition to the family

When your wife is pregnant, you fall in love with her all over again. I was blown away by Abby’s courage, strength, and love throughout the pregnancy. Every ultrasound, test, appointment and everything in between… she handled perfectly. She was patient with me, patient with the process, and stronger than I ever could have been. Now, that love grows daily as she is not just my wife, but the mother to my daughter.

 

PREGNANCY IS WEIRD

Pregnancy is a beautiful thing - it's a miracle and it's an event created and smiled upon by God. But let's all agree for a minute that pregnancy is weird. I still don't really understand how it's even possible. I know it's one of the most common things to happen on this planet, but pregnancy and birth is truly a miracle. Two pieces of genetic material come together and in a matter of 6 weeks, there is a heartbeat. The baby is then living in a sack of fluid INSIDE OF MY WIFE'S ABDOMEN for 40 weeks. Then, *ding* the timer goes off and out comes (violently and painfully) a beautiful little human. Pregnancy seemed so normal to me before Abby got pregnant. Maybe it just changes your perspective when it's your own child of just how odd the entire process is, or maybe I'm just rambling and making no sense, but hopefully parents out there can relate.

I feel like I'm scaring more people that are pregnant or thinking about getting pregnant than I intend to whenever I tell our story of pregnancy, birth, and Hattie. Like I said, the pregnancy went pretty smoothly, but there are always some bumps along the way. I feel like it's God's way of saying, "Listen, no matter how healthy your children are, parenthood is terrifying so I'm going to throw some things at you along the way to prepare you for the future." 

November 25th, 2017 - the day after Thanksgiving - Abby woke me up because she was experiencing some heavy bleeding. She was only around 13 weeks along and we expected the worst. Both of our families were in Denver for Thanksgiving, so I called her mom and we sped to the Emergency Room. It was an awful, gut wrenching morning. What a horrible feeling to think you may have just lost your baby. I sat in the ER with Abby as they did an ultrasound, my eyes searching the screen for a sign of life from our baby. The ultrasound tech wasn't saying anything to us. Eventually Abby spoke up saying, "Can you please tell us what you see? Is our baby ok?" The ultrasound tech looked up and casually stated, "Oh yeah, everything's fine. The baby is moving so much that I can't get a good image." Abby sighed with relief. I burst into tears. My first "Dad tears".

We left the hospital and went to grab lunch as it had been quite the eventful morning. In the car was Abby, me, and my 19 year old brother, Jonathan. We made it into the parking lot when Abby started to feel sick. Hospitals, needles, stress, and pregnancy are not a good combination in the first trimester. She opened the door of my moving car and puked all over the street. Jonathan sat there wide-eyed, and I like to think he learned a valuable life lesson that day - he's not ready to be a father just yet.

 

NAUSEA, NESTING & NIPPLE CREAM

I don’t know why they call it 'morning sickness' when it happens anywhere at anytime. Abby was pretty sick throughout the first trimester and was also really tired. It wasn’t out of the ordinary for her to go to bed at 7:00p. I felt awful for Abby. I can’t imagine that feeling of sickness all the time. The other major bummer was that Abby's sense of smell went through the roof throughout the pregnancy. A heightened sensitivity to odors is a common symptom during pregnancy and it got to the point where cooking any sort of meat in the kitchen was enough to make Abby feel sick. I remember we were cooking for Thanksgiving dinner and Abby had to leave the room. Despite the nausea, Abby pulled through like a champ. She even drove her car the entire 13-hour drive from Dallas to Denver. Like I said, Abby was a pregnant rockstar. Once the second trimester rolled around, it was like a switch was flipped and the nausea was gone.

Now onto Nesting. They say girls start planning their wedding when they’re like 13 years old or something. Well, I'm going to add on that girls start "nesting" the day you propose to them. Nesting is a very real thing. When we found out we were having a baby, the ideas came flooding in. We were in Colorado, living in a two bedroom house - Abby and I were in the master and the second room doubled as a guest room and my office. The idea was once we started having kids, we would build out the basement and put an office and guest room down there. Well, a week before we closed on the house, we found out we were having a little Heasley running around sooner than expected, so I got kicked out of the guest room/office and it quickly became The Nursery.

A visual representation of "Nesting" in action

Abby went full throttle during the pregnancy and I commend her for it. She was strict about the foods she ate, she was active when she needed to be and rested when she needed to be, she carefully planned out all the essentials we would need to purchase and register for, and she planned out that nursery like an architect. Future fathers: just let it happen. The only purpose you serve as a husband to a nesting wife is to do whatever she asks of you. You will build the crib and you will like it. You will install the curtain rods and you will love it. And you will replace the ceiling fan with a dainty little chandelier with a smile on your face. I had zero electrical experience, but I was dang proud of myself when I YouTube’d my way into figuring out how to re-route electrical wiring and replace a ceiling fan with a little plastic chandelier. 

Now onto the third topic of “nipple cream”. There’s not too much to say about nipple cream... I just wanted to add it to this section title because it started with an “n” and it flowed well with "Nesting and Nausea". I will say, however, that I bought Abby a prenatal massage at this massage place for expecting mothers (pro-tip for future fathers… find a prenatal massage place and do this) and the lady at the counter gave me some free samples of nipple cream, saying, “A new mother can never have too much nipple cream.” Words to live by.

HAVING A DAUGHTER

Fast forward to May 24th - we (Abby) brought a beautiful little girl into the world. Now, I’m not really an emotional person. There are times where I wish I was more empathetic, emotional, etc. Despite these facts, I think I’ve cried more through the pregnancy and the few months following the birth than Abby has. Through the tests during pregnancy, the time spent in the NICU, the Emergency Room visits, the days waiting on test results and the nights spent sleeping at the hospital, Abby was hands-down stronger than I was. God knew what he was doing when he made Moms. Marriage and Fatherhood has gradually broken down the walls of my “lack of emotion”. I guess that’s what happens when you become a husband and a father. I remember my dad hit 40 and the floodgates opened. He cries at pretty much everything now, sappy Super Bowl commercials included. 

Heading up the elevator to Labor & Delivery

I don’t know what it’s like to have a son, but I can tell you that having a daughter changes you. A feeling came over me the day we found out we were having a girl. There was this overwhelming desire to do everything I could to protect her - emotionally, physically, mentally - in every way. I know Dads out there with daughters can relate. When I married Abby, there was this strong desire to want to work hard, provide, and protect. Now that Hattie is here, there is an even larger motivation to provide and protect. With every heel prick she had for blood testing, every wire hooked up to her, every X-Ray procedure she’s had, every needle put in her skin - as a parent it breaks your heart to see your daughter in pain.

Hattie was born kicking and screaming. Her cries were so delicate. It’s cliche for parents to say their baby is perfect, but Hattie was and is perfect. I have two beautiful girls to come home to every day. When it’s been a rough day at work or I’m stressed out for one reason or another, Hattie’s giggles are my medicine. 

Hattie is getting to that fun stage where she is beginning to smile, laugh, coo, reach for things and enjoy toys. I'm proud to be her Dad. I have a long time until I figure out the whole Dad thing - I'm only 4 months in! But this is a little bit of what I've learned and experienced so far. The best part of my day today was Abby texting me to let me know Hattie had pooped - she hadn't pooped in like 3 days. Good times.

- David  

Beautiful Rose

First of all... I just wanted to take a second to thank everyone that has commented or personally reached out to David and I over the past few weeks after starting this blog. We have received an incredible amount of love and prayers, and we can't thank y'all enough.

I honestly believe that God gives us little signs on earth that are meant to encourage us. He also has impeccable timing. He places people in our lives, at specific times, to show us that He is always looking out for us.

The beginning of May came, and we thought that winter was finally over. We went to the farmer’s market and bought a bunch of flowers to plant in our garden out front. Well, little did we “Texans” know, that winter in Colorado can come back as late as May or June. So of course, the week after we plant, there’s one big last snow storm. After that last snow melted, our garden was looking pretty pitiful. We didn’t think that any of our flowers were going to come back, because they had all been crushed in the storm.

Fast forward a few weeks…still no flowers…but, it’s baby time. We go to the hospital, have baby Hattie, and endure the 5 hard days in the NICU. The DAY that we finally made it home (after going back to the hospital for jaundice) we came home to one pink rose that had bloomed in our garden. It was FULLY bloomed. It was like it was placed there overnight or something because there weren’t any other flowers in our garden! We decided to call it the “Hattie Rose”. This was the real start of her life, and that pretty rose meant a lot to us! So after enjoying it for a few days, I cut it off, pressed it, and saved it.

Fast forward a month… to the hardest week of our life. Our sweet friends Bobby & Megan were there for us in the NICU for the first, and the hardest few days. They prayed over us, and it is just what we needed. After they left, Megan sent me a song that had been on her heart. It is called “Beautiful Rose” by Sean McConnell. Keep in mind that I hadn’t told her about the “Hattie Rose” story. We listened to the song, and the lyrics were absolutely perfect. That song has gotten us through some very hard times, and whenever I’m feeling discouraged or worried…I listen to it. David and I had both tried to figure out what the song was about, because the lyrics were so spot on for what we were going through, but neither of us could find anything on it.

Fast forward to just a couple of weeks ago, when I started this blog. I received a sweet message from Caroline Halbert (one of David’s friends from High School). She has a beautiful baby girl who was born with a rare condition as well, and she had some very encouraging words. She too has a blog, and I was reading through it and found a video of the song “Beautiful Rose”. I messaged her telling her how much we loved that song, and how it has helped us through so much! She messaged back telling me that Sean McConnell and his wife adopted a little girl from Ghana, with special needs, and that song was about her. HOW AMAZING IS THAT?! No wonder those lyrics spoke to us!! Knowing that song is about a little girl with special needs just made it more special to me.

When things don’t go as you plan, it’s really hard for us to open up our eyes and hearts to watch and feel for little signs from God. Sometimes we are just so stuck in our ways, that we forget that we aren’t the ones that are writing the story, God is. During difficult times we tend to shut people out, blame ourselves, and get angry with God. Trust me… I have been there! Finding out Hattie’s diagnosis was NOT an easy road for us, and it is definitely not what we had planned for. But I can say… that the second that I really opened up to the Lord, I have felt so much peace. He has brought some amazing people into our lives through this journey, and they have truly touched my heart. I feel like I am able to see the world through a whole new perspective.

I remember barefoot creek
And rolled up huckleberry jeans
And posters hanging on the wall
Of heroes that would never fall

Summer nights, kick the can
Huffy bikes and Peter Pan
But baby, this ain't Neverland
No baby, this ain't Neverland

Yeah, maybe life's not what I thought it'd be
It's nothing like my childhood fantasies
It's harder than I could've known
But higher than my hopes could've flown
And better than I ever could've dreamed
More villains and sad endings I suppose
But I'll take the thorns for this beautiful rose

Well, I heard you could make God laugh
By telling him the plans you have
And now I know that to be true
Cause I could never dream of you

Praise the Lord, there's something more than
What we think we're fighting for
Just think what we'd be missing
If we only got what we were wishing

Maybe life's not what I thought it'd be
It's nothing like my childhood fantasies
It's harder than I could've known
But higher than my hopes could've flown
And better than I ever could've dreamed
More villains and sad endings I suppose
But I'll take the thorns for this beautiful rose

Well, maybe life's not what I thought it'd be
Nothing like my childhood fantasies
It's harder than I could've known
But higher than my hopes could've flown
And better than I ever could've dreamed
More villains and sad endings I suppose
But I'll take the thorns for this beautiful rose
I'll take the thorns for this beautiful rose

NICU Life

10% of babies born in the U.S. wind up in the NICU for one reason or another. Often times, it is expected and planned for, especially if the baby is growing slowly or is born prematurely. No parent ever wants their baby to be taken away from them directly after birth and admitted into the NICU, but it's something that happens and happens fairly often. Abby and I never expected to have our baby girl in the NICU, but we found ourselves there on day 1. I work in hospitals for a living but spend most of my time in the OR, so when Hattie was taken to the NICU, it was a new experience for me. I knew about NICUs - the place where sick babies or babies born prematurely go - but spending a couple weeks there was a very unique experience. For me, the NICU had this vibe of resilience - a feeling of overcoming hardship and working towards a goal. Every baby had a goal, and the parents, doctors and nurses were focused solely on meeting that goal. I wanted to write a blog specifically about our NICU experience, what it was like, and how incredible the people who work in the NICU are. The NICU is a very special place, full of very special people.

NICU Part 1

Hattie was born kicking and screaming, and even bigger than we expected her to be. We knew she had microcephaly (small head) from the ultrasounds during pregnancy and knew she was growing a little slower than normal, but the pregnancy was never deemed "at risk" and we never expected spending time in the NICU. About 15 minutes after birth, they put Hattie under the warming lamps and swaddled her. I was looking at her with googly eyes, soaking in the fact that I was now a daddy. While Hattie had been kicking and screaming earlier, something didn't feel right while I was looking at her. She was calming down and her color was looking a little off. I notified the nurse who agreed and immediately unswaddled Hattie and starting patting her on the back. Hattie began crying and we really thought nothing of it. In "Hattie's Story", we explain what ended up happening... about four episodes of what everyone called 'dusky spells' where Hattie wasn't breathing properly and would turn a dusky gray color. We were in the NICU by that afternoon.

What we didn't know about hospitals with and without NICUs is that if you have a baby in a hospital without a NICU, they have to transport the baby to a separate hospital that does have a NICU via helicopter or ambulance. Because the mother is unable to be discharged until they are fully recovered, the father usually accompanies the baby to the separate hospital while the mother stays behind to recover. We were thankful to be in a hospital with a NICU, but have made a point to let future mothers know about this scenario. The more you know!

Abby and I stayed in the "Mom & Baby" area of the hospital where mothers would recover after giving birth. Every three hours throughout the days and nights, I would push Abby in a wheelchair down to the NICU to feed and hold Hattie. While it isn't necessarily a 'happy' memory in theory, I do look back fondly on those times - wheeling Abby down to the NICU at 3 in the morning to be with our new little girl. Abby and I really bonded during those days and nights - we really felt like a team and it was a defining moment in our marriage and beginning stages to parenthood. I learned everything in the NICU - how to change Hattie, how to feed her and burp her - and between my mom, Abby's mom and the incredible NICU nurses, I believe I received the best training possible!

Hattie was on oxygen immediately after being admitted to the NICU. They wanted to begin administering antibiotics, but were having a hard time finding a good access point with her tiny veins. I remember walking in to see Hattie, covered in needlestick marks - they had tried multiple times to get a needle in her arms, legs, feet and head. She had marks all over her. The doctors told us they would have to attempt a central line, meaning they would insert a tube through her belly button and into a main artery leading directly to her heart. It was a tedious procedure considering the danger of the tube entering her heart which could be fatal. They told us they were going to do this around 9p of our first night in the hospital. Abby was obviously worn out given the fact she had given birth that morning and gone through a stressful day. We got a phone call around 11p that the central line had successfully been administered and Hattie was receiving antibiotics. Breathing our first sigh of relief all day, we finally got some decent sleep.

Throughout that week, Hattie was doing great. Her blood cultures came back negative, her echocardiogram looked normal and she was acting like a normal, healthy baby. After 5 days in the NICU, we were home with our little girl. The night before Hattie was discharged, they let us sleep in a family room attached to the NICU. It was our first night together with all three of us... and Abby and I were scared, but considering I had been sleeping on a pull-out hospital futon for a week, I was pretty happy to sleep in a normal bed. Hattie did great that night - no tubes, cords or monitors. We were discharged that next morning and went home as parents to a beautiful baby girl.

NICU Part 2

We were back at the hospital after a couple days because Hattie's jaundice levels had risen. She was under the blue lamps that treat jaundice for a couple days, but fortunately it was a quick trip. We don't consider this another NICU stay, so the real NICU Part 2 was when Hattie had her episodes of respiratory failure.

June 23rd, Hattie was taken in an ambulance to the emergency Room. Flight for Life transferred her to the large Children's Hospital in Aurora and we were once again in the NICU. It was a serious situation and we weren't sure how long our stay would be this time. The NICU Hattie was in directly after birth had about 20 or so rooms, but the Children's Hospital was a Level 4 NICU with 82 beds. We knew Hattie was in the best hands possible. She was immediately sedated and placed on oxygen and a feeding tube. We were assigned an attending neonatologist, a nurse practitioner and a nurse. Since it is a teaching hospital through the University of Colorado, we also saw many residents and fellows throughout the week. Our attending neonatologist was incredible - Dr. Mandell. Her attention to detail, knowledge and bedside manner is probably the main reason Abby and I made it through the week. She was and is an incredible doctor and an incredible person. There are days when Hattie is laughing and smiling and being sociable and I want to go back to the NICU and find Dr. Mandell and just say "Look what you did for Hattie! Look how well she's doing!" She was one of those people that we saw throughout the week that brought comfort and a sigh of relief in a very stressful and scary time. I don't know if she will ever read this or if we'll ever see her again, but Dr. Mandell was simply amazing. I don't know how else to put it.

Our nurse practitioner and nurses were equally as incredible. The hours they work in the environment they are in is rigorous, stressful and emotional. It's just different when there are babies involved. We got close to the staff that took care of Hattie and we think about them often. The Children's NICU was set up a little different as there was one nurse for every two babies. The nurse's desk overlooked the babies through glass windows, so every time an alarm went off, they had a view of the baby to observe and act accordingly. The nurses changed shifts every 12 hours at 7a and 7p and we started having the same nurses most days and nights. It was great to see a familiar face who knew Hattie's condition and progress.

Abby and I stayed in a family room connected to the NICU for the first two nights until we were 'evicted'. Parents of NICU babies will understand - your baby is hooked up to a monitor 24/7 tracking their oxygen saturation percentage, heart rate and respiration rate. This thing would start beeping randomly through the day and night and every time it went off, you immediately thought something was wrong. There were false positives a lot, sometimes her oxygen levels would drop when she was in deep sleep, and sometimes her heart rate would speed up - all leading to a blaring alarm that scares the absolute crap out of you. I still hear the alarm in my head sometimes. It got to the point where Abby and I knew in order to save our sanity and sleep, we would need to stay in a hotel. We met many parents who had been in the NICU for a long time. One family had twins who had been in the NICU for three months so far and had three months to go. When your baby is in the NICU for so long, staying in a hotel just isn't an option so the mom was commuting two hours a day from her home to the hospital to be with her babies. Many babies there were born prematurely, had surgery immediately after birth or were very sick. 

Abby, her mom Tonya (Toa), my mom Sheri (Essie), and I got out one day for some much needed fresh air and a good lunch. The girls wanted to take some time to relax and get pedicures. I'm confident enough in my manhood to admit this was not my first pedicure, but it was a first time for one other thing. The girls all got their toenails painted pink for Hattie. Now, I wasn't about to miss out on supporting my baby girl, so obviously I also had to get my toenails painted pink. I'm not ashamed. As we left the nail salon, I put my shoes on and walked out the door, but not before a nail salon worker came running after me yelling that I needed some sealer or something to protect my new pink toenails from being damaged with shoes on. I have no idea how these things work. She made me sit on a bench outside so she could put some sealer over my toenails (picture below for your amusement).

Hattie had every test done under the sun her second time in the NICU - another echocardiogram, blood cultures, urine cultures, EEG (brain activity tracking), MRI, CT scan, daily reaction testing with the neuro team - and it got exhausting. Everything was once again looking normal until we received the results from her MRI. Her pons was smaller than normal and there were malformations in the ridges of her brain. This information led to the decision to send her blood panels off for genetic testing in Chicago. It would take about 6-8 weeks to receive results, but these results are what eventually led to us learning about her chromosomal deletion, 1q43-1q44. We finally felt like we had some answers. It was finally decided that the respiratory failure (and possible seizures) were due to the perfect storm of a urinary tract infection that had been detected and her brain malformations/chromosomal deletion syndrome. Looking back, we personally doubt she was having seizures as no seizures were ever detected on her EEG's throughout the week. Likely, her immune system was not built fully and could not handle the UTI, leading to respiratory failure. Either way, if she hadn't have had those episodes, we never would have found out about the chromosomal deletion. Dr. Mandell's persistence and determination to find an answer is what brought this information, and we are very grateful. We took Hattie home a little over a week later.

NICU Parents

We wrote earlier about how we felt a little guilty leaving the NICU, and it's true. There are many families that don't get to go home after a week. Parents who have had their kids in the NICU are some of the strongest people I've met. Having your baby whisked away right after birth is a horrible experience and having your baby in the hospital for six months is something I can't fathom. NICU babies themselves are little warriors. We would walk past the rooms of other babies, their names on the glass doors, and wonder what their stories were. I knew God gives special babies to special people, I just didn't know how special until I saw them first hand. 

- David

 

Celebrating the Inches

Just days after Hattie was diagnosed, we received an insane amount of mail from the state of Colorado. Family Voices Colorado-"we help families who have children with special needs"…CRCSN-"Colorado Responds to Children with Special Needs"…Early Intervention- "In home therapy with children with developmental delays"…It was overwhelming to say the least. David and I looked at each other and said, “so are we really special needs parents now?...” We were still in shock about everything, and all of this mail was just making it more and more real.

We are still learning about the different benefits that our state offers, but one program that we were definitely interested in was Early Intervention. We went ahead and set that up, and we had our first session with our physical therapist last week. Leading up to our session, I have to admit, I was nervous. I was nervous to find out what all could be “wrong” with Hattie. I was nervous that our therapist would say that she was really behind, or talk about what she probably wouldn’t be able to do. I would find myself researching “baby milestones”, and even going as far as looking at my friend’s babies on social media. I would try and figure out when they lifted their head, or when they started grabbing toys and sitting up. I would even compare their sizes. Hattie has always grown at her own pace- even while she she was in my tummy. She is still only 9lbs 12oz at 3 months, and I have friends who have babies who are younger, and have already passed her up in size. When we are out and about I can't tell you how many people have come up to us and said "Awww wow! She is so tiny for 3 months!" "Oh wow! Was she a premie??". Ugh. I was tearing myself up over it. I soon realized that researching and analyzing other babies was going to do me no good. All it does is hurt, and cause anxiety. 

Beth, Hattie’s physical therapist, was so encouraging. She lifted Hattie up with everything she did. Every tiny thing that Hattie did she would yell “Yay!! Good job Hattie!”, and Hattie would smile so big. Beth told us things that we should continue to work on with her, and even gave us some homework—but her approach was so positive. Beth never once made me feel like Hattie was different, or behind. Even though I know that we have a lot of hard work ahead of us, Hattie is getting stronger and stronger every day!

Hattie started smiling last month, and we are so thankful for that smile. She also started noticing her hands, and her fingers are constantly in her mouth. Hattie also has great eye contact, and can follow objects really well! There are some things that we are still working on, like lifting her head during tummy time, and “swiping” at toys that dangle in front of her. I have to constantly remind myself that EVERY baby is different, disability or not. These days it is almost impossible not to compare. We have access to EVERYTHING on the internet, and social media can be toxic. Instead of harping over the milestones that she might be a little delayed on, and comparing her to other babies, we are choosing to celebrate every inch. Hattie is going to go at her own pace, and I know that God has already chosen her path! All we can do is help her, and love her!  We are working hard every day, and we can’t wait to continue celebrating the inches with our little Hattie Cakes.  

-Abby

Hattie's Story

Hattie Blake Heasley was born on May 24, 2017 on a chilly Colorado spring morning. The months leading up to her birth were a whirlwind of moving to a new state, taking on a new job position, doctors visits and preparing for our little girl to arrive. We found out we were pregnant with Hattie a week before moving from Dallas to Denver and with everything going on, the months had flown by.

The pregnancy was fairly smooth, with a few bumps here and there as many pregnancies have. We had learned that Hattie likely had microcephaly (a small head) and she was on the smaller side for much of the second and third trimester. While my pregnancy wasn't deemed "at risk" at any point, we still had ultrasounds and doppler scans every other week from 30 weeks - birth. Needless to say, we were just ready for our little girl to get here.

At 10:29am on May 24th, we became parents to a 6lb, 13oz little girl. We couldn't stop staring at this miracle that God had given us. The fact that two humans can make another human still blows our minds. It's simply incredible. Family and friends were there to welcome our little Hattie into the world. 

Somewhere in the afternoon, we had made our way from Labor and Delivery and into the hospital room where we would stay for a couple days before taking Hattie home. We were getting much needed rest and relaxing with family when Toa (my Mom), noticed that Hattie was not looking right. The nurses were called and it was clear that Hattie had stopped breathing. She began to turn slightly purple and was motionless when picked up. In a second, the room was packed with what seemed like 20+ nurses as they administered oxygen and got Hattie breathing again. I wish that I could get that picture out of my mind, but I don't think I will ever forget it. I felt hopeless laying there in the hospital bed, watching them take my baby girl away after only spending just a few hours with her. 

Throughout the afternoon and evening, Hattie had five more episodes of respiratory failure. It was terrifying, discouraging and everything you don't expect on the day your child is born. They transferred Hattie to the NICU where they gave her a central line of antibiotics, began blood cultures and every other test in the world to figure out what was going on. 

Over the next three days or so, we lived in the hospital room so I could recover, visiting Hattie in the NICU frequently throughout the days and nights. We would go down to the NICU and feed Hattie, hold her when we could, or just sit in the room and pray for her. We still had no answers as to what was causing the respiratory failure. As the days went by, test results came trickling in - echocardiograms were negative, CT scans were negative, cultures were negative, blood tests were negative... everything came back negative and Hattie seemed to be just fine. We were thankful for progress and health, but still frustrated that we didn't have a diagnosis.

We took Hattie home on May 28th. It was a relief and an incredible feeling to have her in our home, in her nursery, and loved on by our family. No more IV's, heel pokes or medicine... just us. There was a sense of guilt leaving the NICU as there are so many babies - preemies, sick, disabled - that have to spend months and months in the hospital. If anything is for certain, it is that NICU nurses are angels and NICU parents are superheroes. 

Three days later, we found ourselves back in the hospital as Hattie was showing high levels of bilirubin (jaundice). She had to be under the infrared lights for a couple days, which is pretty common, but it was still disappointing having to go BACK to the hospital. 

After spending 2 more nights in the hospital, we finally got to go home on June 1st! It was the best news hearing that her bilirubin had finally gone down. Yay for no more jaundice!! Through June, we'd had Hattie home for about a month and it was amazing. There were so many new things to learn and experience with a baby - diapers, baths, feedings, pumping milk, car seats, late night wake-ups, etc etc etc. We had newborn photos done, had friends and family visit, and even took Hattie on her first fishing trip. She was doing great and, while still growing slowly, was a healthy and happy baby girl.

Friday, June 23rd - a day before Hattie turned 1 month old, David was unloading from a work trip in the driveway. While in the kitchen, I noticed that Hattie was acting strange and something definitely wasn't right. I yelled for David as I noticed Hattie had stopped breathing. She started to turn blue, and her little body became limp. We immediately took off her onesie and laid her down on the kitchen counter. Normally the coldness of the granite would make her scream and cry, but she just laid there still as could be. We called 911 and the ambulance arrived quickly. Hattie had come out of this apnea episode on her own and was looking just fine by the time the paramedics arrived (of course). They ran vitals on her - oxygen, heart rate, etc all looked just fine. They advised us to call our pediatrician and keep an eye on her. Not ten minutes after they left, Hattie had another episode - dusky, no breathing, motionless. Something was obviously wrong. We called 911 again and this time four police officers arrived before the same paramedics came back. They loaded her in the ambulance and took her to the Children's Hospital which was luckily just a few minutes away. 

Hattie had about five more episodes - one in the ambulance and four in the ER. It was terrifying. They flew in a helicopter to care flight her to the large Children's Hospital in Aurora, but fortunately got her stable enough to take an ambulance later that evening. They wheeled Hattie out the doors of the ER on a stretcher, her little body surrounded by cords, tubes, wires, monitors and oxygen tanks. It was heartbreaking, terrifying, confusing and discouraging. Throughout the entire situation, we felt confident she would eventually be okay and we knew God was in control, but the frustrating piece of it all was not knowing answers. Nobody could tell us what was wrong and why this was happening. The only thing we were told was "she is very sick". It was a gut wrenching feeling that I never want to feel again.  

Our good friends, Bobby & Megan Paulk were flying in that afternoon to spend the weekend with us and meet Hattie. All of this happened while they were in the air, so when they landed we had to break the news that this weekend wasn't going to be the fun weekend we had planned.

Although we didn't have the "fun" weekend we had planned with Bobby & Megan, it was such a blessing that they were there for us that weekend. Having friends by your side, to pray over you during hard times like this, is so comforting. Hattie had several other visitors throughout the week including her Bert & Toa, Essie, Coy, Katie, the Devin's, and Andrew. 

Hattie turned a month old in the NICU. They had her hooked her up to a ventilator, an IV, and were administering antibiotics. Not the most ideal "1 month happy day", but at least we were together and she was getting better. They again did every test in the world - blood cultures, urine tests, CT scans, MRI, echocardiogram, EEGs and what seemed like every test in between. The NICU doctors, nurses and staff were unbelievable. Our attending Neonatologist, Dr. Mandell, was amazing. She really took Hattie under her wing and was clear with us regarding everything she was learning about Hattie. We were in the Children's Aurora NICU for a little over a week.

Throughout the week, results started trickling in. Two of them stuck out - first, she had a urinary tract infection. Since she was so young and little, her immune system likely could not handle it and had made her sick. Second, her CT scans showed some minor brain malformations. They said this may have also attributed to the apnea episodes which may not have just been respiratory failure, but possibly seizures. This was obviously more concerning, so they decided to move forward with genetic testing. They took samples of her blood and sent them off to Chicago for testing - results would be available in 4-6 weeks. On July 1st, we took our little girl back home again.

Right when we thought we were getting the "parenting thing" down... we felt like we were starting all over. Every tiny noise she made, we found ourselves running over to her making sure that she was still breathing. Despite our worries, Hattie was doing great at home. She was moving, kicking and even starting to sleep pretty well. Obviously, sleeping for US was a different story. It was impossible to get a good night's rest with the thought that Hattie might stop breathing or have another seizure. Our saving grace was this pulse oximeter sock called The Owlet (www.owletcare.com). This little sock saved (and still saves) our sleep schedule and puts us at peace throughout the night. It tracks her heart rate and oxygen levels and alerts us if they ever drop or rise to concerning levels. Shout out to Owlet for making an incredible product. 

Friday, July 28th we were told genetic testing results were in and we had a meeting with the doctor back at Children's Aurora. We were nervous, but happy that there was news that would possibly give us some answers and give Hattie a solid diagnosis. We met with a doctor, a physical therapist and an occupational therapist. They explained to us the process for the testing, how in-depth it is, and then gave us a brief refresher on Life Science on chromosomes, DNA and genetics (it's amazing how much you forget from high school). 

They then told us that Hattie was missing a piece of her 1st chromosome. It is the Q side of the 1st chromosome at bands 1q43 and 1q44. The specific name for this chromosomal deletion is 1q43-1q44 and it is extremely rare. In fact, there are only 55 known reported cases of this deletion in the entire WORLD. They said symptoms from this syndrome included seizures, brain malformations, microcephaly and apnea. Everything started to make sense. They told us that we would have to be Hattie's advocate as many doctors would not be familiar with this syndrome.  

I can't even begin to describe the emotions that came over us that day. Thousands of questions raced through our minds. Will she be able to walk? Talk? Go to dance class? Live by herself one day? Drive a car? Have a normal social life? There is such a broad spectrum on what her life might look like. Some children with this deletion never learn to walk or talk, and some go on to live fairly normal lives. Trying to predict Hattie's future is impossible, and that's where we've learned to trust that the Lord has something special in store for her. We know that God is the ONLY one that knows what Hattie's future is going to look like. We just have to continue to be loving and supportive parents, and let Him take care of the rest.

Throughout these three months, we've learned to take everything day by day and not dwell on the possibilities of the future.  

We love our Hattie girl more than anything else in this world. We are admittedly a little nervous, but so excited to experience life with Hattie Blake. We wanted to start this blog primarily to share her journey and spread awareness of 1q4 deletions. Thank you for reading!

- Abby & David Heasley