Love for Lala

05/01/2020

It was a year ago today that, what our OB had found at our anatomy scan at 21 weeks a few weeks before had been not only confirmed, but was more serious than we had thought. We were immediately referred to an MFM, cardiologist and hospital over 6 hours away. After 5 completely "normal", routine, boring pregnancies, I went into that anatomy scan completely unprepared for the possible diagnosis we were handed, I was actually in blissful denial. I was even more unprepared to hear the official diagnosis and what our future may hold. Our entire world was turned upside down.

Looking back at those ultrasound pictures today, I found this one of Delilah showing us how strong she is, and always has been. My girl will conquer amy obstacle put in her place and will come out stronger because of it.

02/14/2020

Happy Valentine's Day from Delilah ❤

02/13/2020

02/12/2020

CHD Awareness Week Photo Challenge

Day 6: Care Team

I know I've said it before, I'll probably say it a million more times, but the care team through Texas Children's Hospital has beyond surpassed all of our expectations. From the entire staff in the CICU, to the staff on the Step Down floor, every nurse we've come in contact with, her Cardiologist, Dr. Gowda, down to her pediatrician Dr. Farmer, the developmental pediatrician, the ultrasound techs, the techs and doctors who performed the countless echocardiograms and ekgs, the nurses who took her in for her CT scans, even the friendly people who would just walk us back and forth to appointments while we were inpatient, my nurses who just an hour after I gave birth took their break time to sneak me over to the other tower so I could see my baby before the doctors were able to come over to check me out and discharge me (I wish I could remember their names, I am forever grateful for their kindness during one of the scariest days of my life, it meant more to me than they will ever know), literally every single person we have come in contact with have been amazing.

Despite Delilah's heart condition being worse at birth than we had expected or could see during the fetal echoes, Dr. Gowda was able to repair it with better results than even he was expecting (and leaps and bounds better than what the hospitals and doctors in Oregon said they could do). The entire care team has been so incredibly knowledgable, caring, patient, kind, and compassionate every step of the way. I am forever grateful that we were able to go through all of this in such an amazing place that has made an impossibly stressful situation, so much more manageable, and taking a bit of the stress away, knowing that she has the best care she possibly could, and we are exactly where we we need to be.

For everyone who has touched us, cared for us, been there for us, prayed for us, and for every single member of her care team, THANK YOU!

02/12/2020

Fly high, sweet Beth 👼🏼

Please, send healing thought and prayers to the entire Hutt family and everyone blessed enough to come to know Beth.

Elizabeth Vera Hutt gained her wings on her 175th day of life at 4:40 am. Late last night, Beth told us she was ready. I cannot begin to express the gratitude we have for the team that worked through the night to make sure Beth's transition was as painless and smooth as possible. We will post when we've had the chance to make plans for celebrating our brave, courageous, beautiful warrior. Please understand that we likely won't be responding to messages or calls while we figure out what "life after" looks like. Much love, the Hutts

02/12/2020

CHD Awareness Week Photo Challenge

Day 5: Heart Family

As a heart family, I can tell you, CHD doesnt just affect the heart warrior themselves. Our whole family has been impacted. We literally packed up our lives, uprooted our children, and moved across the country to deliver Delilah here, and make sure that her continuing care was the best care possible. Our older 2 girls worried and cried along with us when we received the diagnosis. My oldest sat in the cardiologist office asking questions and gaining as much information she possible could. Our 6 year old listened and understood as much as she could and gave us the best hugs at all the right times while keeping our then 9 month old entertained and happy during our long full days of appointments.

CHD has completely changed our lives, but the joy Delilah brings our family, how she completes us so perfectly, makes it so worth it 💗

02/10/2020

CHD Awareness Week Photo Challenge

Day 4: Heart Patient

This is Delilah, our heart patient. She is such a strong little girl, at first glance, you'd never know there was anything wrong with her little heart. But it's the little things, like how if her feet aren't covered, or it's even just a bit chilly out, her feet turn purple really quickly. But despite her CHD, our precious baby is thriving. 💗

02/09/2020

💗

** the newest numbers are actually 1 in 110 babies are born with a CHD

02/09/2020

CHD Awareness Week Photo Challenge
Day 3: Surgery/Catheterization

Delilah had her first cath at just 36 hours old. They went in through her femoral artery and fed the camera and catheter up through her tiny body and through her heart. He then inflated the balloon very carefully, to tear the valve, ideally into 3, somewhat equal parts without tearing too much where there's significant leakage. It's really pretty incredible. The result was significantly better than they had expected, with very mild leakage, as of right now. It was a little over 4 hours long, the doctor called us to keep us updated every 30 minutes on the dot.

This was just the first cath that she will need to have. Delilah is closely monitored to watch for any significant increase in leakage (it's going to increase, but as long as it stays mild, we're happy) and any increase in the stenosis again. When it does, and it will, we will see how her heart is doing and how the valve is looking when we decide with her cardiologists if she can have another catheterization, or if it's time for a valve replacement. Then we repeat over and over until she is done growing and she gets her final valve replacement. She will forever need to be monitored closely, but the hope is that once she gets that final valve replacement, that she will be able to lead a fairly normal life, just a little more slow moving.

02/08/2020

CHD Awareness Week Photo Challenge

Day 2: Hospital

I've made it no secret that we had a tough decision to make after finding out Delilah's diagnosis and the care she would need after birth, and for the rest of her life; either deliver up in Portland, then move across the country with a fragile newborn with a heart condition, freshly out of a 3-4 month hospital stay, or move 35 weeks pregnant, risking going into labor and not being near 1 of the only 3 hospitals on our route that could safely deliver our baby. We decided to go ahead and get to Texas as quickly as possible, and hope everything goes smoothly along the way (with a few backup plans, a very detailed medical history and plan for treatment, and a list of viable hospital options, just in case I went into labor along the way).

Luckily we made it here without incident, and the morning after we arrived, we began the plethora of appointments, tests, and tours. We met with teams of doctors and nurses and they all sat with us and came up with a plan of action for our little Delilah. About 30 minutes after Delilah was born, she and my husband headed over to the Legacy Tower to the CICU. She seriously received the best care there. We couldnt have been happier with the empathy and care that we were shown, as well as their extensive knowledge.

The CICU itself was amazing. There was a 1:1 nurse to patient ratio, yes you read that right, every child had their own nurse at all times. Each child had their own room, and Dan and I had the ability to stay in room with her 24/7 (although Dan went home with our other children most nights). There was a Ronald McDonald house family room right outside of security for the kiddos to take a break and color or play board games.

We, without any doubt, made the absolute best decision by coming out to Houston, and I am forever grateful for Texas Childrens Hospital and the entire care team.

02/07/2020

CHD Awareness Week Photo Challenge 2020

Day 1: Diagnosis

Everyone goes into that 20 week anatomy scan so excited to see their little growing human, possibly find out the gender, it's one of those appointments you look forward to your whole pregnancy. This was my 6th pregnancy, it was nothing new, I was so excited to walk into that office and see our little girl again (we brought all of our kids with us because they loved getting to see the ultrasounds and we knew this was likely our last, so we tried to let them be a part of as much as possible to soak it all in). We already knew we were having a little girl. It was April 10, 2019, I was 22 weeks. I remember the tech taking a little more time than normal, but she congratulated us on our 5th daughter, and then said she couldn't get good enough images of her heart, so they'd try again in two weeks.

Ok, fair enough, that's just another time I get to see my baby. Two weeks later we loaded the younger two kiddos up and made the long drive out to my OBs office for another ultrasound. This time I took notice how many times the tech kept typing "LVOT". I figured she maybe kept getting a slightly better angle or image. She had the doctor come in and talk to us, and she basically said that they weren't getting great images, it was probably nothing, but she'd like the specialist to come in to look at it but she wouldn't be in for another two weeks. I started to panic a little but reminded myself that ultrasounds aren't very accurate, I'm sure everything will be fine.

We went in for the specialist ultrasound and fetal echocardiogram and she told us that the baby had extremely severe aortic valve stenosis and I couldn't continue my care there, I wouldn't be able to deliver there, and I would have to be seen over 6 hours away. They scheduled me in for an all day appointment with the hospital up in Portland, having ultrasounds, echocardiograms, seeing cardiologists, nurse coordinators, nicu specialists, MFM, a new OB, the works.

Honestly, again, we just thought "oh, itll be fine, I'm sure that the hospital in the smaller town just doesn't see this often, it's probably not as bad as it seems, I'm sure everything will work out." We were in for a real awakening. Our last appointment of the day was with the cardiologist to discuss her findings from our testing, and come up with a care plan.

The doctor told us that she had a very severe form of Aortic Valve Stenosis, and she drew a diagram. AVS is basically where the aortic valve (the valve that pushes the oxygenated blood out through the last chamber of the heart and delivers oxygenated blood to the rest of your body) didn't develop properly. There are varying degrees of AVS, hers is critical. The 3 tissue paper thin flaps that make up the valve "door" actually never formed into seperate flaps, and the texture was thick and "gnarly" in texture. It was actually worse than we had expected. This was the critical time when we made the decision to move before she was born, to ensure that she got the best care possible from day 1.