Surgery #1

First and foremost, we are happy to report that Max's first heart surgery was successful and is now behind us. It was a hard day filled with a lot of emotions and tears. Brad and I are hoping things just get better from here.

The last two days in the NICU our little fighter had taken a turn for the worse. His pulmonary edema was rapidly increasing, his Lactate (a test that measures lactic acid and is a sign of heart failure) had quadrupled, and he was extra sleepy. Even if he wasn't scheduled for surgery today he would have been added to the OR schedule because the Lasix (diuretic) and the Milrinone (heart medicine) were no longer keeping up with Max's heart.

Max the night before surgery

Our morning started bright and early and the anesthesia team picked up Max from the NICU at 7:15AM. I was too emotional to walk with the team down to the OR so Brad escorted his little gladiator "MAXIMUS" down to the operating dungeon.  The anesthesia team worked for over two hours getting Max prepped for surgery and getting all his lines in. Little man still has his PIC line and then they added a central line, a peripheral arterial line (PAC), a line that goes straight into his heart (I forget the name) and intubated him. Around 9:45AM, Dr. Frank Hanley (Max's pediatric cardiothoracic surgeon) came in to speak with us before his surgery. He went into detail about what todays surgery entails and why he decided to postpone the big open heart arterial switch surgery. In his words he thought there was a 20% chance that Max would need a new mitral valve during surgery because of the mitral valve straddling issues and the strange attachments. He said that putting a valve in a newborn is far too risky and he wasn't willing to take that risk. His plan for Max is to put the Pulmonary Artery (PA) band on loose enough that he can have it for a year or more but tight enough that it reduces the over-circulation to his lungs and increases the under-circulation to his body. His goal is to keep the band on and let Max grow until he's at least one year old. He wants Max to be big enough that if he does end up needing an artificial mitral valve that it is safe to put one in. At this point we should be used to getting unexpected news but I swear it never gets easier. Many of the cardiologists had told us that his major surgery would likely be in the next 6 months and now we have been thrown yet another curve ball.  I know that we can't dwell on the future and just have to live in the present. Easier said than done! 

Around 10:30AM Dr. Hanley met us back in the OR waiting room to let us know everything went smoothly and that our little gladiator was in recovery. About an hour later they transferred Max up to his new home in the CVICU (CardioVascular ICU). With all things considered he looks pretty good. I have never seen so many wires and lines coming out of such a little body. It's a heartbreaking site and I've been struggling all day. I'm so happy to be married to such an amazing man that truly is my partner in all of this. Brad has been awesome today. When mom breaks down, he is strong. When I can't love on Max because it is too hard to see him like this, he gives him kisses. I don't wish this journey on anyone but I am very thankful that I get to walk this journey with him.

Day 1 After Surgery

Max is doing really well and is really stable. They are slowly weaning him off intubation and we hope to have him extubated by late tomorrow. Please keep little Max in your prayers... he is definitely not out of the woods yet but at least we are one step closer to coming home.

And We Have a Surgery Date

Little Max is scheduled to have his pulmonary band surgery on Tuesday morning at 7:30AM. Things have been going well in the NICU. They have noticed an upward trend in his oxygen saturation as well his respiratory rate; both signaling that his heart is working a little too hard lately. The cardiology team has reassured us that the surgery should help bring those two numbers down and allow Max's heart to work more efficiently. The Neonatology/Cardiology team decided to increase his Lasix (diuretic) to three times a day in order to help improve these numbers until he makes it to surgery. Little man is a great eater (just like his brother and sister) and has been downing my pumped breast milk. Unfortunately even with his appetite and my supply, he was still losing weight. Many cardiac babies have trouble gaining weight because their hearts have to work extra hard which in turn burns more calories. In order to combat this downward trend, they made the decision to fortify my breastmilk with formula to give him an extra 4 calories per feeding. We are happy to report that after one day of fortified feedings our little man gained 40 grams (1.5 oz)! Little Max also got a special bilirubin blanket to help with his jaundice. Luke always said he wanted a "blue baby" as blue is his favorite color. We tried explaining to Luke that we don't want a "blue baby" but thanks to Max's Neonatologist, Dr. Van Meurs, Luke finally got his blue baby brother!

Luke's "blue" baby brother

Sometimes it is easy to get discouraged having a baby in intensive care, but Dr. Van Meurs remarked to Brad and I today that Mighty Max gets an A+ for his performance in the NICU thus far. Considering his cardiac anomalies he really is surpassing all of their expectations. We hope and pray that are little fighter continues on this path!

The best kind of snuggles!

Baby blues

Thanks for all the kind words and prayers. Please keep little Max, the surgical team, and the rest of our family in your prayers and thoughts on Tuesday. We know the first few days after his surgery are going to be rough but we try to stay positive and look forward to coming home in the next week or two. Brad and I have been missing Molly and Luke like crazy and we are looking forward to having our family all under one roof!

3/5 of our family

Expect the Unexpected

Many of you know that I tend to be very type A and that I love to plan... well I have quickly learned that when your child is diagnosed with a very serious heart defect that you have to learn to roll with the punches.

Our little guy is still very stable. He is taking pretty much all the milk that I pump and is completely off TPN (Total Parenteral Nutrition). He is a little jaundice just like his brother and sister were but at this point far below the threshold for him to go under the lights. The CVICU team decided to start him on a diuretic yesterday to help with fluid retention and tachypnea (fast breathing), but he is doing really well. He finally is out of the deep newborn slumber and is alert and awake. He is a super happy baby and as sweet as can be. Brad and I keep remarking how "normal" and good he looks but we know his little heart is anything but normal.

Yesterday morning a large team of pediatric cardiologists and pediatric cardiothoracic surgeons met to discuss the surgical plan for little Max. At rounds yesterday morning Brad and I were shocked to find out that his surgical plan has changed pretty drastically. When we met with our surgeon, Dr. Frank Hanley, he informed us that he wanted to do Max's arterial switch surgery (physically switching the aorta and pulmonary artery) within the first week of life and that he thought our little guy would need one surgery and be done. Well as of yesterday that is no longer the plan. After doing the ECHO outside the womb they were able to see the mitral valve a little better. The mitral valve is the valve on the left side of the heart that separates the left atrium from the left ventricle in order to control blood flow. Well Max's mitral valve is working wonderfully but it straddles the right side of the heart and has some strong attachments. Basically because Max has a large ventricular septal defect or hole in between the left and right ventricles, the mitral valve doesn't have a wall to attach to so it has made some rather strange attachments that have complicated his repair. I was told that Dr. Hanley went back and forth many times looking at the pictures of the mitral valve attachments. He ultimately decided that it is safest to hold off on Max's arterial switch surgery until he is a little bit older and bigger. The plan now is to do his repair in two phases. Hopefully this Friday or next week little Max will have an open chest surgery (but not open heart) where they will put a band on the pulmonary artery. Because Max's aorta is on the far right side of the heart (when it should be on the left) they need to decrease blood flow to the pulmonary artery in order to increase blood flow to the aorta. Basically this surgery will be a temporary fix to better balance his oxygenated (red blood) and deoxygenated blood (blue blood). The plan then is to go home to Orange County after recovering from his pulmonary band surgery where we will be followed closely by Dr. Doshi at CHOC. Then when he is around 4-6 months of age old we will head back up to Stanford for his full open heart surgery and arterial switch. The hope is that in waiting a little longer to do the major surgery that they can preserve the mitral valve and avoid giving Max an artificial one.

This information was hard to take. We were hoping to just be done and have his heart fixed quickly and now we know it is going to be a process. On top of that we now have to watch little Max have at least two major surgeries where they have to crack open his chest. As a parent you only want what is best for your child but it is still so hard to see them suffer. I wish I could have the surgery for him but obviously that is not a possibility. We were taken aback but not totally shocked as Dr. Doshi had originally told us that more than likely he would have a more minor procedure, go home, and then have his major surgery when he was a little older. I left rounds yesterday morning feeling defeated with more questions than answers. Fortunately for us Max has an amazing cardiologist at CHOC that has really been such a blessing to our family. Dr. Doshi proactively reached out to multiple doctors at Stanford to get all the information from the surgical consult meeting and called me to discuss everything. She reassured us that she really thinks this is what is best for Max in the long term. She applauded Dr. Hanley for taking the conservative approach and really giving Max the best shot at a bi-ventricular repair.

We are still waiting on a surgery date for the pulmonary band. We are hoping this Friday or sometime early next week. The surgery should take about 30 minutes and they anticipate him to only be in the hospital for about a week give or take after his surgery. And then we will head home and enjoy some time as a family of 5!

Thank you for all of prayers. Please pray that first surgery goes smoothly and that Max's mom and dad have enough strength to get through the next few months...

And I'm Out!

And He's Here

Maxwell Chad McEachern completed our family on Friday May 20th at 1:04pm. He weighed in at 8 lbs 11 oz and was 21 inches long. 

*Sorry it has taken me so long to post an update... I have been busy recovering, pumping, visiting the NICU and spending time with Luke and Molly.*

The c-section went fairly smoothly. The chief resident and the attending OB were rockstars and got this little guy out and sewed me up fairly quickly with no complications.

This is Max in the operating room (OR) with his complex Pediatric team. Shortly after my Cesarean section started a team of about ten doctors and nurses flooded the OR to help little Max. This team consisted of neonatologists, cardiologists, residents, fellows and nurses. He was deemed stable enough that I was able to see him for a few minutes in the OR before they took him to the NICU.

Straight out of the OR they took little Max to the level IV NICU and hooked him up to several monitoring devices (Heart rate, Oxygen saturation, blood pressure, etc) and put in his umbilical arterial line (UAC) and and intravenous line (IV) in his arm. After having two intravenous lines fail, they decided to give our little guy a PIC (peripherally inserted catheter) line. Within the first few hours of being born they performed an ECHO on his heart and did scans of the rest of his body. The ECHO pretty much confirmed the same heart defects that were diagnosed in utero (DORV, TGA, and a large VSD). The good new is our little guy has been really stable and thriving. We have been pleasantly surprised that he is not on any medications or oxygen. He has been doing so well that we have been able to hold him and even give him pumped breast milk. Originally we didn't know if his heart could handle the extra blood flow to his gut in order to process the breast milk but he is eating like a champ. This kid is already our little fighter! I know we are bias but he is so precious (and chubby). Both Brad and I think he looks a lot like his sister Molly but I keep calling him Luke!

Big sister x 2 

Daddy

Hi Everyone!

After talking to the CVICU (Cardiovascular Intensive Care Unit) team this morning we are are hoping to get a surgery date by Wednesday. It is looking like he might have his open heart surgery either Thursday or Friday of this week or sometime the following week. Because he is doing so well it puts him lower down on the priority list for surgery. This little guy has already been such a blessing to our family and we thank you all for the prayers and sweet messages. Keep the prayers coming...

Waiting Game

Nothing new to really report from Palo Alto. Baby Max is stable and seems to be quite happy staying put for a few more days. He keeps passing his Non-Stress tests with flying colors and seems perfectly happy destroying my ribs and hips. I have been feeling pretty good... or as good as you can feel at 38 weeks pregnant.

Brad finally made it up here for good yesterday and will be on paid leave from Deloitte for the next 8+ weeks. Thanks Deloitte for being so generous with parental leave... in our situation it truly is a blessing! The c-section is still scheduled for May 20th at 12pm. I am not sure who will be performing my c-section but we know the proper Neonatology and Cardiothoracic will be in place ready to help our little guy. Molly is super excited to meet her little brother and talks about it non-stop. Luke on the other hand could care less and has no idea what is coming. Ready or not, in 6 days (or less) we will officially be a family of 5! Please keep our little guy in your thoughts and prayers.

To Stanford We Go

At the end of March, Brad and I headed up to Palo Alto for a series of medical appointments. We met with the fetal coordinator, had a full anatomy ultrasound, had a fetal ECHO, met with two fetal cardiologists, met with Dr. Frank Hanley (our surgeon), met with our social worker, met with the chief of neonatology, and met with a high risk Obstetrician. Let me just say that Stanford is an amazing place! All of these professionals knew about our little guy and everyone assured us how they will work collectively to give our guy the best shot at a full repair. The overwhelming feeling Brad and I received on this visit is our little guy is a "normal" patient to them. Up until this point, almost every medical professional we encountered had never seen this kind of a heart defect. His super rare heart defect (1 in 500,000) is something they deal with very often at LPCH and is almost routine for the teams up there. Dr. Hanley informed us that our little guy's surgery would be a difficulty level 6 out of 10 for him personally and that he believes there is a 99% chance our little guy will survive the surgery. Dr. Hanley's surgical plan is to physically switch the pulmonary artery and the aorta by cutting above the valves. Then he will use the large VSD (hole) to create a Bi-ventricular system and close off the hole. If all goes well our little guy should have normal red/blue blood circulation with some abnormal plumbing. His overall prognosis pending a successful surgical repair is a normal childhood with lifelong cardiac care. We know that he won't be the star quarterback on the football team and we anticipate the high likelihood that he may have ADHD or other learning disabilities. But from where we started that awful day in January to where we are now is truly amazing.

Although given a choice, Brad and I made the decision that what was best for our little guy is to be born at LPCH and not have the added cardiac stress of being life flighted after being born closer to home in Orange County. The C-section is scheduled for May 20th. We were informed that there will be a Neonatology and Cardiothoracic team in the OR waiting for him. The plan is for him to head straight from the OR to the level IV NICU (Neonatal Intensive Care Unit). Dr. Hanley would like to do his open heart surgery sometime during his first week of life. After his surgery he will most likely spend 7-14 days in the CVICU (CardioVascular Intesive Care Unit) and then probably another week or two in a step down unit.

Although I am scared to death of the days to come, it is a huge relief to be up here in Palo Alto already and have such amazing teams in place waiting for him to make his appearance. The hospital set us up with a temporary apartment within a mile of the hospital. I am currently up here by myself but Brad and the kids head up here this weekend for Mother's Day. The tentative plan is to have the kids stay up here until after their baby brother is born and then head back down to Orange County with their Toto and Papa (my mom and dad) when the little guy has his open heart surgery. Although I miss Molly and Luke terribly, I keep reminding myself that it's just one of the sacrifices we have to make as a family to give our little man the best shot at a good life. Thanks for all of your prayers and I will keep the updates coming...

Where it all began...

Our lives were forever changed at a follow up appointment at our perinatologist's office on a January morning.  We thought we would be there for a quick check as our baby had already had a full anatomy scan four weeks prior and was deemed normal. After a few minutes of scanning our doctor, Dr. Kfir, came in and told us he had some concerns about the baby's heart. It's hard to explain the feeling when someone tells you something is wrong with your baby but I don't wish the feeling on anyone. I tried to remain positive as Dr. Kfir continued to scan. After another hour of scanning, he informed us that our baby had a very complicated heart defect. He actually wasn't even sure what was wrong, he just knew something wasn't right with the baby's two main arteries. He told us we need to do an amniocentesis right away to figure out if the baby had one of the genetic syndromes that are sometimes associated with these type of heart defects. Through lots of tears we met with the genetic counselor who informed of all the unimaginable possibilities. The word termination was uttered so many times that looking back I am not even sure how I ever walked out of that office. Dr. Kfir told us that kids with similar heart defects have a 50-70% survival rate given no other genetic conditions.

We left the perinatologist and headed straight to an emergency appointment at CHOC (Children's Hospital Orange County) with a fetal cardiologist. We met with the most wonderful Fetal/Pediatric cardiologist Dr. Nita Doshi. She performed a fetal ECHO (heart ultrasound) on the baby for over 2.5 hours. She didn't say much while she scanned and I knew it wasn't going to be just a small hole in his heart. She sat us down and began to explain our baby's heart to us. So here goes...

Our baby has three congenital heart defects: Double Outlet Right Ventricle (DORV), Transposition of the Great Arteries (TGA), and a large Ventricular Septal Defect (VSD). To read more about his specific condition click here DORV. In layman's terms our little guy has both his aorta and pulmonary artery on the right side of his heart. Normally blue blood (deoxygenated blood) runs from the right side of the heart to the pulmonary artery. The pulmonary artery then takes the blue blood to the lungs where it becomes oxygenated or red blood. The red blood returns to the left side of the heart where it is pumped to the rest of the body by the aorta. The problem with our little guy's heart is that the two systems our not separate so the red and blue blood will always mix and his heart will have to work twice as hard to provide enough oxygenated blood to his body. In utero he is doing really well because my placenta does most of the work, but once our little guy is born is when he will start to struggle...

A Normal Fetal Heart:

 Our baby's Heart:

After a lengthy consult with Dr. Doshi, we were told that they couldn't help our little guy at CHOC and he would need to have surgery at Stanford, Columbia, or Boston Children's. She also reiterated that we needed to know what else we were dealing with and an amniocentesis was imperative.

The next morning we headed back to Dr. Kfir's office for an amniocentesis. The amniocentesis was scary enough but not as bad as having to wait two weeks for the results. This was the longest two weeks of my life. I am forever thankful that I have two crazy other kids that kept me as busy as possible as we waited. Then I got a phone call from the genetic counselor that all tests from the chromosome analysis and microarray were normal. It was like a giant weight being lifted off our chests. Now Brad and I knew this guy had a chance and it was time to fight for him!