Elijah's story
Friday, November 23, 2007

In July of 2006, six weeks after our wedding and while on our honeymoon in the Bahamas, Dan and I found out that I was pregnant. We had a few days of excitement before the worry began. From the very beginning, the pregnancy was a difficult one. We had reason to think we had lost the baby a few different times. I had a constant feeling that something just wasn't quite right.

At my 20-week ultrasound, my fears were confirmed. Something was wrong with the baby's heart. The information that the doctor initially gave us wasn't entirely accurate, which led to a lot of uncertainty and emotional turmoil. The fear of the unknown, we learned, can be crippling. I had to get an amniocentesis procedure a couple different times and I had a few more ultrasounds before we learned the details about our baby’s problems. The time between learning something was wrong and finding out exactly what was wrong were the most difficult six weeks I've experienced in my life. Once we had some sort of idea about what to expect and prepare for, we felt significantly better about the situation and we felt ready to tackle it.

When I reached my 29th week of pregnancy, the contractions that I'd been having since week 25 became much more frequent. I spent a few days in the hospital to monitor them and to attempt to slow them down. I tested positive for fetal fiber-nectin, which means I had a very good chance of going into labor sometime within the following two to three weeks. Somehow, through a complete miracle, my body held out for another seven weeks.

I spent those seven weeks on strict bedrest and didn't lift a finger besides to shower, use the restroom and go to doctor's appointments. Dan was wonderful during that time. He did absolutely everything for me so I could rest and keep the baby where he was supposed to be. That was just one more thing that proved I have the world's best husband.

Every morning I would go out to my daytime bed in the loft and I would say, "THANK YOU GOD FOR ANOTHER DAY." It was crucial that the baby stay in my belly for as long as possible because adding prematurity-related problems to heart defect-related problems equals ugliness.

On February 19th, at exactly 36 weeks pregnant, I had a particularly difficult doctor's visit. I came home feeling more overwhelmed, sad, frustrated and scared than ever. I was tired of the constant bad news that every doctor’s visit brought. The baby wasn't growing as much as he should have been, so there was continual worry about his small size and why he wasn’t growing much and whether or not he'd continue to thrive or even survive at all. I completely broke down. The stress had caught up to me. I laid in bed and cried harder than I had ever cried. I had a chat with God that night. I said, "Ok, I get it! It's hard, this is going to be difficult. I've had enough. Please, do something, because this chapter needs to be done." Six hours later, at 2:00 in the morning, my water broke. It was time. God had answered my prayer.

The labor progressed quickly (you can read the full birth story here). I was only in labor for seven hours. We attempted to deliver the baby but his heart rate kept dropping to a scary, low range, so the decision was made to do an emergency c-section. At 9:55 a.m. on February 20th, 2007, Elijah Daniel Porta was born! He was beautiful and perfect. He weighed 4 lbs. 14 oz. and was 18 inches long. Even though he was four weeks early, he didn't have a single prematurity-related complication, THANK GOD. His heart diagnosis was: Tetralogy of Fallot with Pulmonary Atresia and MAPCAs. He had a few other anomalies that were found at birth: his right kidney had failed to develop so he had only one functioning kidney, his urethra didn't fully develop (hypospadias), and he had a sacral dimple. All genetic testing came back normal, so these anomalies were not related to a genetic disorder.

He has functioned just fine with his solitary kidney, and we don't foresee it causing any problems in the future. His hypospadias was surgically repaired in August of 2008. An ultrasound was done of his sacral dimple at birth, which revealed (incorrect) positive results. At 28 months old and still not close to walking, we decided to look into it further. An MRI revealed that Elijah had a tethered spinal cord. He had the surgery to release the tether on June 18, 2009, so we are hopeful that this will help to improve his muscle tone and mobility.

We had initially thought that an open heart surgery would need to be done within a week of Elijah's birth, but along with the MAPCAs portion of the diagnosis came extra collateral arteries that helped blood get where it needed to be, so immediate surgery was not necessary. We were told he would need two to three heart surgeries within the first few years of his life, the first being somewhere around six months of age.

Elijah was in the NICU for three weeks after birth, gaining enough strength to eat on his own. His heart condition made his little body work extra hard, so he tired very easily. We brought him home with a feeding tube, but pulled it out after just a few days because he started gobbling down all of his bottles on his own.

He grew really quickly and never had a problem eating once we got him home from the hospital. All of his doctors were amazed at his progress, considering the extra work his body was doing. At two months old, he had his second heart cath (angiogram) because his oxygen saturations were very low (in the 60s). The cath revealed that surgery would need to be sooner than anticipated.

Three weeks later, on May 25th, 2007, Elijah had his first open heart surgery at three months old. Dr. Moga, his surgeon, placed a temporary conduit (shunt) that acted as his pulmonary valve into his heart and he also redirected some of his collaterals that were supplying duplicate bloodflow to his lungs.

Elijah unexpectedly thrived after his first surgery. His weight gain continued to surprise all of his doctors. He started out not even being on the charts because he was so teeny and it didn't take him long to get to the 50th percentile for both height and weight. This is not typical for a lot of heart babies.

Initially Dr. Gremmels, Elijah's cardiologist, told us that his second open heart surgery (the "total repair") probably wouldn't need to happen until fall 2008, but with as fast as our boy grows everything comes sooner than expected. In February-March 2008 Elijah's oxygen saturations started dropping quickly and a heart cath revealed that surgery would need to happen soon.

The weeks leading up to his second surgery were difficult. His health declined very rapidly. His oxygen saturations were running between 40% and 65%. He had blue lips and purple fingernails. He kept getting sick and his body wasn't able to fight anything off. He had a few scary blue spells because his body had little tolerance for anything out of the norm (e.g., taking a bath). He threw up a lot and had some scary, high fevers. His body was READY to have a fixed heart!

On April 15th, 2008, Dr. Moga was able to do everything he set out to do with Elijah's heart and completed the total repair. He replaced the conduit with a bovine valve, fixed the VSD (hole) and placed a stent in his right pulmonary artery. The surgery went flawlessly and the recovery had no unexpected bumps. We were told to expect a two-week stay in the hospital but we were home in eight days! He is one tough little kid.

Elijah's heart is now "fixed," and functions as a healthy heart functions. He will still need a few more open heart surgeries in his lifetime to replace valves as he outgrows them, but in an ideal world, no other invasive work besides that should need to be done. He will probably need a lot more heart caths in his young life to monitor the growth of his pulmonary arteries.

Looking at this sweet little boy, you would never know the complexity of the problems inside his body. He is as normal as can be. Because he lived the first 14 months of his life with seriously low amounts of oxygen in his blood, he never really had much energy and because of that he is very far behind with his gross motor skills. He has very low muscle tone in his body, and we have worked hard to tone up those muscles.

At 28 months old, he is delayed in his speech and in gross motor development. He attends weekly occupational, physical and speech therapies to help in these areas. He will currently tolerate walking with the help of a walker, and we are hoping that his recent tethered spinal cord surgery will help him to walk independently soon. He has finally started to say more words in the past few months. He currently has about 60 or so words that he says consistently. He will catch up soon enough and we try not to worry about the delays too much. Considering what he's been through, he is doing far better than anyone would expect.

I can sense a deep strength and wisdom when I look into Elijah’s eyes. There is an overpowering sense of peace that surrounds this little boy. The first moment I saw him, I knew with all the certainty in the world that he was going to be okay. He has important things to do in his lifetime. God has very purposefully placed him in our hands, and that makes us extremely lucky people.

Posted by The Portas 8:39 PM    

Labels: bedrest, birth, development, heart, medical, pregnancy, surgeries

8 comments:

At 6:58 AM Samantha said...

Thank you for writing this up! I am crying...

Hugs,
Samantha

 

At 11:56 PM Kathy said...

I didn't even know you had written his story...it is beautiful. You're such good parents...boy, did Eli know what he was doing when he picked you guys!
Kathy

 

At 1:05 PM Anonymous said...

Hi Megan,
I am friends with Samantha Major and have started reading your blog about Elijah. What a beautiful boy you have!! I also have a son with CHDs...please feel free to visit our site! I will be saying big prayers for his surgery to go smoothly next week!!

Take care,
Cindy

 

At 1:06 PM Cindy said...

Oops, I forgot to leave our CaringBridge site...
www.caringbridge.org/visit/jacobhayes

 

At 3:27 PM Anonymous said...

Hello, my name is Kayla Poret and I have a 8 month old, Logan Paul, with TOF with pulmonary atresia with collaterals and I am eager to speak with you. We are going through exactly the same situation as you are. It is almost scary. My husband and I know exactly how you and your husband feel. This is our first child and we know nothing different, however, God gives us courage daily to get through it. Please visit our website www.caringbridge.org/visit/loganporet
We are waiting on our repair and we will be going to Boston, MA. We are from Louisiana, but you do what you have to for your baby.
Can't wait to here from you
Kayla

 

At 9:10 AM Kayla said...

Hey Megan and Elijah, Logan and I are sitting at the hospitality home thinking about how far we have came. We are so blessed. It feels like a dream to be out of the hospital, as you know firsthand. I just want to send you many thanks for your loving suppoet and encouraging words in during our journey. You are very special to us. God willing, Logan and Elijah can meet in the near future and become lifelong pals. We also want to be apart of your ongoing journey. I wish we had known Elijah's surgery was happening the same time as Logan's. He will forever be in our prayers and thoughts. Again, thank you for your support. Keep in touch.
Love and God Bless, Kayla Poret

 

At 9:11 AM Heidi said...

Wow...I have chills. What an amazing little boy. :) You two are strong parents.

 

At 4:53 PM Amy said...

What a beautiful and touching story. You all have had quite a journey together already! My thoughts are with you and your BEAUTIFUL baby boy.

Amy

 

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