Wednesday, March 7, 2018

Springtime Busy Box

In a perfect world, both babies would nap every day at the same time. But more often than not when Lydia wakes up from her nap, Tex is still asleep so I need to keep her quiet. Have you ever tried keeping a two-year-old quiet? This Springtime Busy Box was my answer!

In all honesty, when I taught Pre-K and Kindergarten I hated our sensory bins. They were always messy, the kids fought over them, and, umm, germ city!!! 

BUT, as an early childhood educator, I do understand their importance. Sensory bins provide small motor practice; pinching, scooping, squishing etc. They're also great for scientific exploration. Children can experiment with different weights, textures, and sounds. Lydia really enjoyed scooping up this mixture with the eggs, snapping the eggs together, and then shaking them to see what noise it made! The puffballs make a quiet noise whereas if she scooped more rice or "sparkles" it made a louder noise. Sensory bins engage the child's sense of touch, smell, sight, sound, and... let's be honest, sometimes taste. 

We are also going to use our Busy Box to learn the letters of her name, reinforce colors, and practice matching!
For my Springtime Busy Box I used
uncooked rice
puffballs from the craft section
plastic Easter eggs
sparkly gemstones from the craft section
tools such as spoons, measuring cups, and funnels
large plastic tub with lid

NOTE: Use what is safe for your child. Lydia doesn't put things in her mouth and never really has so I know these materials, though small, are safe for her. Always supervise your child during play!

What would you use for your Busy Box?

Wednesday, February 28, 2018

Heart Month Spotlight- Huck Tricuspid Atresia

Happy Heart Month!

To close out Heart Month I want to share with you Huck's story! Huck was just a few doors down from us when we were on the 15th floor; AKA: the step-down unit. His story and ours have many similarities and... he is so stinkin' CUTE!
To follow Huck's journey, check out his Momma's blog- Southernly Ever After.

We found out we were expecting our second baby when our daughter, Whitlee, was almost two and found out at 16 weeks (selectively) that it was a little boy that we decided to name  Huck. 
How we found out his diagnosis was a little dramatic. We went to our 20-week anatomy scan, not expecting much action since we already knew he was a boy, which they confirmed. A couple of days later I got a phone call from my OB’s office saying “they weren’t able to get a good picture of his heart, probably just a positioning issue, probably just because he was so active, happens all the time” and they wanted to scan again in two weeks. In that two weeks, I googled countless images of heart ultrasounds. When she started scanning, I was definitely not seeing what I thought I should be seeing, but I didn’t rely much on my two-week google education, so I asked her, “do you see four chambers?” I knew ultrasound techs aren’t allowed to say much, but they can usually answer yes or no anatomical questions. All she said was, “You’ll have to discuss your results with your doctor.” So I asked again, “Do you see four chambers or not?” She gave me the blankest stare and said, “You’ll have to discuss the results with your doctor.” I was panicking at this point so I said: “Then go get my doctor.” She told me my doctor was unavailable and that I needed to leave, that they would call me with results. In my state of panic and hormones, I made a scene and refused to leave until they told me what was wrong with our baby. My sister-in-law was with me and she said it was like something from a movie. Slightly embarrassing now, but it got me answers. My doctor’s RN took me to a room where she explained that they couldn’t see all four chambers of the heart and they were sending me for a level 2 ultrasound and an echo as soon as they could schedule something. 

We had that appointment two days later in Galveston at UTMB, where they diagnosed him with hypoplastic left heart syndrome. We were devastated. I can’t even think about that day without crying. We had an appointment with a fetal cardiologist the next week, where he confirmed a diagnosis of hypoplastic left heart syndrome and gave us the rundown on the plan of care. He told us I would deliver in Galveston at UTMB, and they would transfer Huck to Memorial Hermann Children’s via ambulance and I could join him when I was discharged. Something about this whole scenario just rubbed me the wrong way so we pursued a second opinion at Texas Children’s. We faced a mountain of insurance-related issues, but after a long hard fight, we finally had an appointment at the fetal center in the TCH Women’s Pavilion at 33 weeks. I delivered our daughter at 34 weeks due to preeclampsia, and I was so nervous Huck would come early and we wouldn’t have proper plans in place. Our fetal cardiologist (who is now our pediatric cardiologist), Dr. Lawrence, immediately informed us that he actually didn’t have HLHS. She said he had a rare combination of several different defects. He has tricuspid atresia with a ventricular inversion (his ventricles are swapped), which resulted in a hypoplastic left-sided right ventricle. He also had a hypoplastic aortic arch, congenitally corrected transposition of the great arteries (due to the ventricular inversion), a VSD, an ASD, and an abnormally large PDA. She said most likely his surgery plans would stay the same but we’d have to wait until he was born to be sure. 

I thankfully made it full term without preeclampsia this time, and Huck was born at the TCH Women’s Pavilion on May 13, 2017, and I was able to hold him and kiss him before his Daddy went with him to the CVICU. They even let Whitlee come in and meet him before he left. 
We had our sit down with our surgeon, Dr. Mery, a couple of days later where he explained with Huck’s anatomy they had some options for the first surgery, but after that, he would be treated as a single ventricle baby and would have a Glenn and later a Fontan. He said he wasn’t sure what surgery he would do until he was in there because he couldn’t get a good measurement on the echo on how restrictive his arch was and how large his VSD was. If he could rely on the VSD to stay open, it gave them options, which included a PA band or an arterial switch. Ultimately he went with a modified Norwood with a double barrel DKS and BT shunt. They also reconstructed his arch while they were in there. Huck had that first surgery at 3 days old, and after nearly 12 hours he came out with flying colors. His recovery went really well and we were sent to the step-down unit a couple of weeks later in preparation to discharge to stay in Houston until his Glenn. 

The day before discharge, we were checking off all the things - we had our go home echo, did our CPR training, had our single ventricle training and tools to take home, had meds filled and delivered, and Huck was finishing up his car seat test (which he passed), when his team walked in. They said his echo had shown that his ventricle wasn’t squeezing properly and they were going to RRT him back to CVICU, this time to the heart failure unit. They wanted to intubate and do a CT to check his heart, specifically his coronaries. Everything came back great. The next day they extubated him and put us back on track to go home again. They decided that day during rounds to keep him CVICU one more night before sending us back to the floor. He coded that night. And again 11 days later. Both times, it was because he got mad and instead of his heart rate rising like a normal person would when they’re mad, he would just crash. Thankfully both times they were in the room when it happened - it’s hard to ignore a Huck scream - but they were able to react quickly and save him. His second code landed us a permanent stay in CVICU for the duration of his interstage. Thankfully the next few months were mostly uneventful, we just had a rough time trying to keep him calm and we dealt with a round of NEC watch with bowel rest and reoccurring blood clots from his PICC line. Anytime he had a rewire, he got a new clot. 

Huck’s Glenn was on the books for August 30. Hurricane Harvey hit Houston from about August 25-29, so we were looking at having to postpone. After his pre-Glenn cath lab a few days prior, he was so angry, more than normal, so they started investigating why. They found pneumatosis on an X-ray, which is highly suggestive of NEC. They diagnosed him as stage two NEC this time, which earned him 14 days of bowel rest. This postponed his Glenn for sure, but it finally happened a couple of weeks later. Everything went smoothly and we were shocked at how fast Glenn recovery happens. Once Huck overcame some eating issues from bowel rest and surgery in general, we were finally discharged home at the end of September! After six long months of Houston life, we were so excited to go home. We had been living in a travel trailer at the Lakeview RV Park, shuffling Whitlee back and forth between grandparents and us, and my husband had been driving back and forth for work every day - two hours each way. 
Huck came home on seven medications, including Lovenox shots for the clots, and at 9  months old/5 months post op, we are so thankful that we’ve been able to wean him off of everything except half a daily aspirin, which his cardiologist says he will be on long-term. Stopping Lovenox shots was a celebrated day! We just got released to cardiology visits every 6 months and Huck is thriving at home, meeting appropriate milestones, which we are so thankful for. His ventricle still doesn’t squeeze 100% properly; it has an area of mild depression but has remained stable. We’ve been told it may regain full function at some point or it may stay the same. 

I truly believe everything happens for a reason. I don’t know God’s plan for why we’ve been through this and I may not ever, but I know he has a plan for our family. Oddly enough, our neighbors a few houses down just delivered a baby with HLHS at TCH (Hi, G family!) and we were able to help them prepare a little ahead of time with what to expect and some of the things we wished we’d known ahead of time, so that makes me feel useful, like some good comes out of it. I hope in the future, we can always focus on the good and continue to make every day we’re given with Huck count. 

Wednesday, February 21, 2018

Heart Month Spotlight- AJ HLHS

Happy Heart Month!

I've been saving this story because I wanted to be sure that I could do this little guy justice. Miracles exist, and y'all, AJ is proof. His parents have been through so much and have fought for him and with him every step of the way. They are also the nicest people! To follow AJ's journey, 'like' his Facebook page, Advocating for AJ.

Antonio Jordan Garay or AJ as he is know was born on October 17th 2016 with Hypoplastic Left Heart Syndrome (hlhs), Restrictive Atrial Septum(ras) and Left Ventricle dependant Coronary fistulas/sinusoids. He also had two true knots in his cord. Despite all that he was born pink and needed no resucitation! We received his initial diagnosis at 19 weeks during a routine anatomy scan. We were told he had HLHS, a congenital heart defect that is fatal without a series of palliative surgeries.
We prepared for his birth, at home in San Antonio. The hospital decided his 1st open heart surgery  would happen at just 10 days old. Surgery was abruptly cancelled the night before, they found that his heart was more complex than they thought. We later found out his heart is truly one of a kind. His only option at life would be to go to Texas Children's. Hospital in Houston, 3 hours away from home in San Antonio. Once the decision was made he was life flighted 3 hours later at just 13 days old. We packed up and prepared to leave our other 3 children for an uncertain outcome and an unknown amount of time.

On 11/2/2016 AJ had his first open heart surgery called the Hybrid procedure. He recovered well. His aorta began to narrow and he had a stent placed on 12/9/2016. Then a g-tube placed 12/21/2016. He again did great and continued to recover.
On 1/13/2017 they decided to address his RAS. They placed a stent to open it. He came out and did great, then shortly before midnight he coded. They emergently reintubated AJ and worked to get his heart rate down. He stabilized that night and we spent the next 13 nights sleeping in recliners as AJ continued to decompensate. The next day on 1\14\2017 AJ developed an extremely dangerous infection called Necrotizing Endocolitis(NEC) it has an extremely high mortality rate especially for someone that was in his unstable condition. The next 48 hours were critical, but AJ prevailed.
Then on 1/18/2017 everything came crashing down. His heart was having terrible arrythmeia that was affecting his blood pressure. They spent 9 hours pushing drugs into his body desperately trying to counter act what the arrythmeia was doing. We watched our baby turn grey and cold and were told to start making end of life decisions for him. We had several nurses and doctors come bedside and cry with us for our son. They believed his heart was failing and he wouldn't make it through the night.
The next morning they decided he needed an emergent trip to Cath lab to get a better look at his heart. By now his heart had been in a fatal rhythm for almost two days, taking to Cath would mean be extremely high risk best it was our last option. Before they could take him back a wonderful nurse whom we have grown close with gave us a very special rosary. I put it in his hand and read the story of Fr. Seelos for whom the rosary is in honor of. AJ's heart went into normal sinus rhythm for 6 minutes straight! The cath was postponed until he was less critical. Over the next several hours his heart was more and more in normal rhythm. The next day they did the Cath and found no additional issues with his heart. It was not in failure and his arrhythmias stoped. In less than a week he was off the ventilator and back to his old self.

They decided now was the window of opportunity to perform his next open heart surgery the Norwood. On 2/2/2017 he underwent his 2nd open heart surgery, he flew through it like a champ in the first 36 hrs. Then he began to decompensate. On 2/12/2017 he coded and was back on a ventilator. He went back to the Cath lab days later and found his lungs weren't getting enough blood flow.
On 2/16/2017 AJ went for his 3rd open heart surgery, the Glenn procedure. On 2/23/2017 AJ once again developed NEC this time it caused his bowel to perforated resulting in emergency surgery and ileostomy. He struggled to recover from the the Glenn and developed plural effusion needing chest tubes to drain them. He had multiple trips to Cath lab and was diagnosed with pulmonary hypertention and also underwent a thrombectomy. He had been on the ventilator for nearly two months and started to make plans for a trach for him.
Then on 3/29/2017 we were called, AJ's heart had stopped and they were doing CPR. The did compressions for 12 mins and he came back. We later learned it was do to massive pulmonary embolisms that completely occluded his lungs, it is a miracle he survived. The clots were removed in the Cath lab. It was decided to take his Glenn down as his body was not accepting it. A Glenn take down is extremely risky and not ideal. He underwent his 4th open heart surgery on 4/3/2017 at just 5 months old. He came out getting the odds again. A few days later he had his chest closed. For the first time in months he was able to be extubated! Unfortunately due to all his complications he was habituated to massive amounts of narcotics, because of these he would go apenic. After of few episodes of apnea his lung collapsed several times. We decided the best thing for AJ would be a tracheostomy to have a secure airway and allow him to progress on 5/12/17 AJ had his trach placed.

Within a month for the first time in his life AJ went to the step down unit and we were preparing for discharge. AJ was going home on hospice but we were excited none the less. The excitement only lasted a week when AJ began having complications. I knew something was wrong and demanded we be sent back to the CVICU. We were initially hoping it was a quick fix but once again my mommy instinct told me different, I knew it was his bowels again. The next night we received a call that AJ had went into pulseless vtach, he once again had CPR and this time they used a defibrillator as well. Once again AJ prevailed, pulseless vtach in usually not survivable especially for a heart baby who we also found was in septic shock.
After many tests and monitoring AJ continues to decompensate over the next few days. He became so swollen his ears folded over and he couldn't be touched without massive amount of pain. I knew it my heart what the issue was and fought for the surgeons to take him back even though the tests showed nothing. They finally agreed and prepared us for him to not come out of the OR alive. A heart baby in septic shock doesn't survive bowel surgery. They closed the blinds gave us privacy to say goodbye until they took him back. A few hours later we got the word he pulled through! Further more they discovered it was in fact his bowel, it had flipped on itself causing an obstruction. If I didn't push for surgery he would have died. The days leading up to this were the worst we have ever seen AJ my heart broke for him and questioned if I was being selfish by wanting him to stay. I asked God to not leave my arms empty and fill them how ever he saw fit, I became pregnant that week!

Over the next few weeks AJ made very very slow progress and of course some steps back. Some set backs were bad including another code and CPR again. Many doctors questioned AJ's ability to recover enough to ever get out of the hospital and what his nuero status would be after all the trauma. Eventually thanks so a dedicated primary team AJ stated having slow steady progress. Days turned to weeks, which turned to months. Finally the day came we didn't ever think would happen!
After 353 days inpatient on October 5th, 2017 AJ was discharged! Remember that special rosary AJ received? Well as it turns out October 5th is also Fr. Seelos' feast day!!! AJ came to our new Houston home (the doctors recommended we permanently relocate). We have since adjusted to out new normal life and focus on living very much in the moment! His siblings have been absolutely amazing and are very active in all his care. We feel so blessed to be apart of his story and that God would trust us to be his parents. We enjoy celebrating every 1st he has, big and small! Next month AJ will have another big 1st as he becomes a big brother!