A much needed update

Sorry for the lack of updates lately... life has just been busy busy busy!

Shortly after my last post our family walked in honor of Max at the OC Congenital Heart Walk. It was a great experience to be able to walk with family, friends and along side many other heart families. Sometimes it is still hard to talk about everything we have been through as a family and it so nice to be around other families and heart moms who just get it. We also had the privilege of meeting a young woman named Heidi Burns who was born with a very similar heart defect as Max twenty something years ago. She is amazing woman who has beat so many odds... you can read more about her here and shop her super cute shirts that give back to so many heart families here. Meeting people like Heidi gives me hope that Max will lead a happy and fulfilled life! Thank you to everyone who walked along side us and who donated to the Children's Heart Foundation. Brad and I are still trying to figure out how exactly we want to give back and what we want to fight for, but this Heart Walk was a good start!

Shortly after the heart walk we saw Max's cardiologist for his 6 week post op ECHO, EKG, and exam. Max's heart is still doing amazingly well. He still has a leaky tricuspid valve and a leaky aortic valve but Dr. Doshi doesn't believe these valves will pose a problem in the near future. His oxygen saturations remain in the mid to high 90s which still amazes me every time we see the pulse ox on his little foot. Dr. Hanley (Max's surgeon) is the man! Upon leaving Dr. Doshi informed me that she didn't need to see Max for three months! I made her repeat herself and then I cried happy tears. Ever since Max was diagnosed in utero back in January we have had weekly checkups on his heart. I told everyone at CHOC cardiology that I love them but I was happy to NOT see them for three months. Well about a week after this great news I noticed a little red spot on Max's incision. After a day of watching it get worse I decided to be that annoying mom and I texted Dr. Doshi a picture late on Friday afternoon. In true Dr. Doshi fashion she got right back to me and told me that Max had an appointment first thing the next morning. Max saw the cardiologist on call who was able to drain the lesion and prescribe antibiotics. The good news is the infection was localized and we were able to catch it early before it turned into something else.

I wish I could say that the incision infection was the only hiccup we have had recently. About a month ago Max was in his swing and was falling asleep and I thought I saw him shaking. I convinced myself that it was the swing that was shaking and not Max. About two weeks later after my first day back at work Max started shaking while falling asleep in my arms. I was able to grab him tightly and he snapped out of it. We had a follow up scheduled with Dr. Doshi for Max's incision infection and when I mentioned these episodes, she suggested we get a neurology consult. She explained that heart lung bypass can increase the chance of having seizures and we want to catch them early if they are indeed happening. Shortly after the appointment Max had two episodes within five minutes of each other. Each episode only lasted a few seconds but it was pretty upsetting to watch. After these scary episodes Dr. Doshi was able to get Max an emergency appointment with Dr. Shrey at CHOC Nuerology. After a lengthy appointment Dr. Shrey explained to us that he doesn't think Max is having seizures and that his shaking spells are on the spectrum of normal infant behavior because he only has them while he is falling asleep. To be on the safe side we will do an outpatient EEG while he is falling asleep to make sure his brain waves are normal. I was very stressed leading up to this appointment and really prayed a lot that our Max wouldn't have to battle seizures along with his heart condition. We are still awaiting insurance approval for the EEG, but this mom is much more relaxed about the whole thing.

Along with seeing Max's cardiologist, neurologist and pediatrician, we also have been doing infant therapy and Physical therapy (PT). Many people have told us that early intervention is key, and after our first session with his physical therapist I totally get it. Because Max has spent so much time on his back as the result of two back to back open chest surgeries, he has developed a flat head and problems with his muscle tone in his trunk. There are certain post-op sternal precautions when your child has any open chest procedure, but those precautions can lead to other problems. The good news is that Max continues to make great progress in terms of his physical development. He rolls in both directions, sits with assistance and is finally beginning to bare weight on his legs. My dad called Max "rubber legs!" because his legs would just curl up or wobble when you tired to bounce him on his legs.  It's amazing how much can change in just a few days, but Max is now able to spend about 30 seconds on his less "rubbery" legs. I am so proud of how far mighty Max has come since his open heart surgery August 4th... He truly is our Miracle.

Now that we are in cold and flu season we will need to take extra precautions with Max. Although Max looks great on the outside he will never have a truly normal heart. When many of us get sick our heart and lungs have to work extra hard and with Max he doesn't have the extra reserves that many of us are lucky to possess. I hope people will understand that if we ask our friends and family not to touch him without clean hands that we are just trying to keep our little guy out of the hospital. Beginning in November Max will be one of a few high risk kids that will receive the Synergist shot at CHOC. This monthly injection prevents Max from getting the RSV virus that sends many kids like Max to the hospital. Also at the beginning of January we will head back up to CHOC to meet with a team of 8-10 high risk infant specialists that will perform a detailed assessment of Max's development and determine if any additional services are needed (OT, PT, Nutrition, Speech, Social, Cognitive, Behavior, etc). I think it's the hospital way of making sure none of their high risk kids fall through the cracks. We are thankful for all of these specialist looking out for Max.

Also some of you might have seen this post on Facebook but I thought this blog post of 9 Things Parents of kids with Congenital Heart Defects Want You to Know was spot on. And don't worry we are not planning on expanding our family... 5 is enough!

This weekend marks our 4th year of walking in the CHOC walk at Disneyland for our niece Riley that contracted bacterial meningitis at 9 months. This year we walk on team Courageous Cousins for Riley and Max who have both have been through too much in their short lives. Fight on!!!

And now we begin to give back

Well we are now officially three weeks post op. Mighty Max has been doing really well. He still seems a little fussy but he has come a long way in two weeks. He is drinking a ton of milk and already gained two pounds since his surgery. We saw Dr. Doshi last week and everything looks stable. She did mention that his tricuspid valve (valve that separates the right atrium from the right ventricle) was leaky but we are hoping that it improves over time as the ventricles adjust to their new configuration. Now we see what everyone meant when they said Max would need cardiac care his whole life. There are many things to watch for even after his full repair! During this visit we also brought Molly and Luke for complete cardiac work ups. Siblings of kids with a congenital heart defects have a 10% chance of having a heart defect so we wanted to rule everything out. The good news is they both have completely normal hearts! Our next cardiology appointment for Max is in three weeks which is the longest we have ever gone in between appointments since his en utero diagnosis back in January.

Happy 3 months to this little love

We are home and adjusting to life as a family of five but Brad and I already want to jump in the heart family world to make a difference. On Sunday September 18 we plan on walking in the OC Congenital Heart Walk. For local people we would love for you to join us on team Mighty Max for a mile walk around the Irvine Great Park. Sign up here. And for everyone else please consider donating to the cause. All the money raised goes directly to the Children's Heart Foundation and the Adult Congenital Heart Association. Donate here.

Our team shirts!

Also at the end of October we will be walking for the fourth time in the CHOC walk at Disneyland to raise money for Children's Hospital Orange County. We have always walked for Team Riley for our niece that contracted bacterial meningitis and continues to fight on but this year we are walking for team Courageous Cousins!

So long LPCH

Thursday Max was officially discharged directly from the CVICU. Discharge was up in the air after Max had a rough night. Max's nurse informed us that he only slept two hours the night before and refused to take a bottle. Once I showed up Max looked at me like where have you been and gulped down 3.5 oz of milk. Nothing like mommy guilt for not being there with your baby but there are no beds in the ICU and sleeping is not allowed. Max still seemed very wired and just couldn't settle to sleep no matter what we tried. The team thought that he was experiencing a combination of ICU psychosis and withdrawal. We thought the best thing for Max was to get him out of the hospital and back to the quiet Ronald McDonald house. Thursday afternoon Max was very fussy and refused to settle and go to sleep. That evening I made a desperate call to the fellow on call and explained to her that Max had slept less than 4 hours in a 36 hour period. We talked about readmitting Max for a morphine taper, but after a late night run to the drug store Max passed out and stayed asleep for 8 hours straight. Each day he is slowly coming back... less fussy, less wired, and more and more smiles and giggles.

Upon Max's discharge I had pretty much given up on getting to see Max's surgeon Dr. Frank Hanley and thank him. As we were packing up and waiting for some paperwork for discharge we got a nice surprise...Dr. Hanley graced us with his presence. He generally does not hang out in the ICU so it was a very unexpected visit. I finally got to give this amazing man a hug and thank him for giving my baby a chance. Then Dr. Reddy, Max's attending, offered to take a picture of the family with Dr. Hanley (Luke was napping). I can't wait to show Max some day the gentle man that changed the course of his life!!!

The man!!!

Multiple attendings throughout Max's short stay in the ICU remarked what an amazing repair Max was lucky to receive. Brad and I knew that there were only a handful of surgeons across the nation that actually could give Max a biventricular repair, but I guess we didn't realize the high likelihood of a different outcome. Dr. Reddy trained at Boston Children's and remarked that she thinks Dr. Hanley is one of the top three surgeons in the world! I read recently that this man selected pediatric cardio thoracic surgery because it was the one area of surgery that scared him. Thirty something years ago outcomes from open heart surgery were very poor and Dr. Hanley saw this as an opportunity to really make a difference! We are lucky to have Dr. Doshi who made sure we ended up in the right institution with the right surgeon for Max. We have now seen too many stories of single ventricle repairs and bad repairs simply by parents not having the knowledge and resources for their child's specific condition.  Not all pediatric cardio thoracic surgeons and centers are created equal. Some of these institutions have 40% survival rates and places like Stanford publicly release their 98% survival rates and treat way more complicated kids.  There are several organizations trying to combat this problem and Brad and I plan on spending our time and money helping other less fortunate families make the most informed decisions for their kids.

On my way home!

In the mean time we are going to enjoy being a family of five under one roof. Molly and Luke flew home with my mom yesterday and we are going to drive Max back. When I said bye to the kids at the Airport yesterday Molly said to me, "Starting tomorrow we get to ALL be at our house for FOREVER!" Through the tears I know we have all been through a lot over the past few months, but we now get to be a family of five for FOREVER thanks to Dr. Hanley and all the wonderful people at LPCH!

Happy Day

Today is a great day not only are Luke and Molly coming to visit, but Max is getting discharged!

Our mighty max has truly been mighty. He was extubated successfully on Monday night. It took Max five hours to wake up from his Fentanyl and Morphine sedation drips but once he woke up everything moved quickly. After extubation they moved Max to high flow 8L/min of oxygen. Over night they slowly kept decreasing the oxygen levels and all the while his oxygen saturations stayed between 98-100.  By 1Pm the next day he was all the way off the oxygen. After carting around portable oxygen over the last two and half weeks and always having a nasal cannula on Max's face, it is so nice to see our baby again!

The whole waking up from anesthesia wasn't totally a walk in the park. Tuesday morning we walked into the CVICU to find Max very agitated. I quickly realized something was not right with Max's eyes. For my optometry colleagues, Max had a 70 prism diopter constant right esotropia (crossed eyes) and the right eye was not tracking at all. His nurse that morning was a little inexperienced and this mama was freaking out. I asked a lot of questions for my mind quickly went to this is NOT NORMAL and what neurological event happened during his surgery/recovery to cause this. A few hours later the doctors rounded on Max and assured me that this a very common presentation after being on such heavy sedation meds for a prolonged period of time. Throughout the day the esotropia became less pronounced and Max's eyes started working together as a team. Yesterday even when Max got upset I saw no evidence of an eye turn. Praise God!

Max was supposed to be transferred to a step down unit on Tuesday, but there were no open beds. Yesterday they told us that Max would be transferred first thing in the morning and once again no open beds. So it looks like Max is just going to be discharged directly from the CVICU. He had a pretty good day yesterday with all things considered. I spent all day in the CVICU holding Max, loving Max, feeding Max and trying to get Max to sleep. The kid was wired and with all the excitement of the CVICU he slept maybe 45 minutes total all day. We are hoping he had a restful night, but even if he didn't he will be out of that place in just a few hours.

This CVICU/recovery stay has been a complete 180 from our last stay. Max has a made a record turn around and will only have stayed 7 days in the hospital (6 days post chest closure) after open heart surgery! We were told expect the recovery to be two to four weeks. Brad and I are both shocked but what do you except from such a strong little boy. Max's new bi-ventricular heart has already made such a difference. His coloring is amazing and so pink and healthy! His breathing is normal and no more chest retractions. He takes a bottle two to three times as fast as he used to without taking breaks to breathe. It's like we have a new baby. We still have only seem glimpses of smiley/giggly Max but he is slowly coming back. I am sure it will help to be out of the hospital with his brother, sister, and Toto (grandma). After talking to his attending in the CVICU yesterday, we have decided to spend a few extra nights at the Ronald McDonald house before taking Max home to Orange County. We want to make sure he is completely stable before making the drive. I think the last discharge and subsequent emergency room visit has me a little nervous.

This whole experience has been a whirlwind. There has been a lot of stress over the last couple of months, but we are hopeful that things will continue moving in the right direction. We were told yesterday than on Max's last ECHO the valve under his aorta is a little leaky. This is very common after open heart surgery and is something they will watch. Max will continue to be followed closely by Dr. Doshi and CHOC and hopefully no further surgical intervention will be necessary. I told some of our favorite doctors and nurses at Stanford that we love them but we hope to not see them again anytime soon!

Thanks everyone for your continues support and prayers. Our family has been through a lot but seeing Max come out the other side of this truly is the biggest miracle! MAXIMUS! MAXIMUS! MAXIMUS!!!!

Moving forward

Good morning! I wanted to give everyone a quick update. Max is still doing really well and is stable. His heart rate, oxygen saturations, EKG, etc all remain wonderful. Our little guy is still intubated but there are slowly decreasing his sedation. The plan today is to extubate and switch little Max to CPAP (less lung support). For those that have never heard of intubation it is a tube that runs down your throat to your lungs and is hooked up to a computer generated ventilator. This computer system basically breathes for you. To take the tube out (extubate) is a BIG step in the recovery process and requires Max to start breathing for himself. We hope today goes smoothly and we have been reassured by the team they have reviewed his failed extubation from last hospital stay multiple times and are determined to make it successful. So far this CVICU stay has been a completely different experience for both Brad and myself. Although this surgery was much more invasive and required heart/lung bypass, this surgery made Max have a fully functional heart. His new cardiac stability has made a world of difference for his recovery. One of our nurses that trained at Boston Children's drew us this before and after of Max's heart. You can see from the before picture how much blood mixing and how inefficient our little guy's heart truly was.

Before: DORV, TGA, VSD, PA Band 

After

Brad and I treated ourselves to the movie Bad Moms yesterday. It was a great distraction and provided some much needed laughs, but it also made me miss our kids. Molly and Luke have been in San Diego with my mom and with Brad's parents. We are thankful for family to help us out during this extremely difficult time, but are so ready to have our family back together again. On Thursday the kids come up to see their baby brother. I can't wait to give them a big hug and show them the wonderful and fancy Ronald McDonald House that we have been staying in!

The Longest Day

I know many of you have been anxiously waiting to hear... Max's complete repair was a success!

Our day started nice and early and we arrived at the hospital at 6:15 AM for Max's surgery to start at 7:30 AM. We were quickly informed that Max's surgeon, Dr. Frank Hanley, had an emergency surgery the night before that went into the early morning hours and that Max's surgery would be delayed until 10 AM. We didn't mind waiting, but waiting with a baby that had his last bottle at 1:30AM was definitely not very fun. With all things considered, Max did really well and only screamed a little! We met with Max's pediatric cardiology anesthesiologist, Dr. Downey, and enrolled Max in a few trials for kids undergoing open heart surgery. Stanford is a research hospital and they are always doing studies to try to make going on the heart lung bypass machine safer. Thanks to past trials over the years, Max's survival rate went from nonexistent to 98%. Brad and I both feel that enrolling Max in these trials will hopefully help future kids like Max have even better results.

They finally took Max to the OR around 10 AM. I gave Max a big kiss and was a complete blubbering mess. It's so hard to kiss your baby good bye not knowing what lies ahead. Dr. Downy is the sweetest lady and picked Max right up and started singing to him on the way to the OR. Brad and I are so thankful for all the wonderful doctors and nurses that clinically do such amazing things but are also so loving and human with our little guy. Dr. Downy and her team started prepping Max and getting all his lines set up. He has a central line in his neck and another central line in his groin, he has two IV lines, an arterial line, and a line that goes directly into the right atrium of his heart. Around 12:45PM Dr. Hanley came to meet with us in the family waiting area. He explained the procedure and reiterated that he was very confident that this surgery would be successful and hopefully Max's last. Up until that point I was nervous wreck, but Dr. Hanley's confidence and demeanor gave me a complete sense of peace. Brad and I shook this gentle mans hands and told him to take care of our little guy!

Dr. Hanley was in the OR with Max for 4.5 hours. The majority of that time Max was on the heart/lung bypass machine. They give Max heparin (blood thinner) and potassium that slows his heart beating while he was on bypass. We have been told that the bypass machine is the size of a large table and is able to do all of the work of the heart and the lungs while the heart is being operated on. Dr. Hanley first performed the arterial switch portion of the surgery. He cut above the valves of the two great vessels and then switched the aorta and the pulmonary artery. From there he closed the small ASD that was created in the cath lab after his last surgery. Then came the super complicated closure of the VSD (Ventricular Septal Defect or hole). He actually made an incision in the right ventricle and patched the VSD. Thanks to Dr. Hanley's amazing hands and attention to detail he was able to preserve the integrity of the mitral valve. He did not need to replace the mitral valve with an artificial valve and he was able to leave all the chordates attached to the valve in their current location. After Dr. Hanley finished his portion of the surgery he spoke quickly to Brad (I was pumping) and then went to go update the ICU team. It took another 1.5 hours for the anesthesia team to stabilize Max and then he was brought up to the CVICU.

Finally around 7:30 PM we were able to see our baby. He looked really good with all things considered. We were a little surprised to find that they had left his chest open due to a small bleed that was close to one of his coronary arteries. They decided to patch this little area of bleeding with some glue type stuff and leave the chest cavity open in case the bleeding didn't stop. Dr. Maeda who is the transplant surgeon at Stanford actually closed Max's chest this morning in the middle of the CVICU. They quickly turned Max's bedside into a sterile OR and closed him up. We were told that everything went smoothly.

Overall Max has been doing really well post surgery. The team actually said that he is doing better than expected. Brad and I are so happy to see that his oxygen saturations are now reading 98-100. This number has always been such a source of stress for us since his PA band surgery at the end of May. Pre-opertatively Max was hanging in the 60s and 70s on oxygen, so we have come a long way in just a few hours.

We know that the next couple days Max is still pretty critical but we are very pleased with the way things are currently going. Brad and I know all too well from previous experience that things can take a turn for the worse quickly so we are prepared for the worst but hope for the best. But now we get to enjoy that we finally have a pink baby!

Over the next few days I will be on the lookout for Dr. Hanley. I sincerely want to thank this man for giving my son a chance. He is an amazing man and truly one of a kind. We will forever be grateful to Frank for fixing Max's broken heart. I look forward to the day that I get to tell Max about the gentle man that changed the trajectory of his life! Thank you for all of your prayers. Mighty Max is truly the biggest blessing!!!

A trip to the ER

We returned to LPCH a little sooner than expected. Max was discharged from the NICU yesterday around 2:30PM. He seemed a little tired and congested but those things were somewhat expected after being intubated and sedated for his heart cath 24 hours prior. We brought him back to the hotel where he progressively got fussier. Brad and I thought he was just constipated because he seemed uncomfortable and after 5PM refused to take a bottle. I went to CVS around 8PM to grab some tylenol and prune juice. By the time I got back to the hotel Max just didn't seem to be himself. He was very fussy and we couldn't calm him. I noticed he was breathing really heavy but I initially thought it was just from crying so hard. Then Max started having serious chest retractions, began bobbing his head, and every couple of breaths was gasping for air. We knew this was not normal and made the decision to take him to the ER.

Stanford ER is a very crazy place. There are metal detectors, security, and police everywhere. I barely gave the front desk Max's name when a nurse took one look at Max and alerted the pediatric staff that there was a baby not breathing well. I'm sure their sense of alarm was heightened because Max was already on a constant flow of oxygen and was still having trouble breathing. Within minutes a whole team of doctors and nurses were in his room. They turned up his oxygen to 4 L/min (he is normally at 0.5L/min) and started talking about reintubating him. The Respiratory therapist started suctioning his mouth and nose but didn't clear much. He then took a closer look way up his nasal passageway and saw impacted boogers. He began suctioning very aggressively for several minutes with lots of saline. The amount of stuff that came out of Max's nose was very impressive. As soon as the RT was done suctioning, Max opened his eyes and looked at us an smiled. His breathing quickly returned to normal and within minutes he was back to our normal baby. After an x-ray, some blood work, and a few attempts at an IV, Max was transferred back up to the NICU for observation.

Max was discharged again today and is finally back to our normal baby. He is eating normally, breathing normally, and sleeping normally. The doctors think because Max had been on the portable oxygen machine without humidification for so long (because we have been traveling) that it dried everything up. The dried boogers literally occluded his nasal airway which quickly became a big problem because babies breathe through their nose. We still can't believe that the whole scary experience was from boogers but he was in serious respiratory distress. Now we just need to love on Max and keep him healthy until the big day on Thursday!

A plan and a date!

Sorry for not updating sooner, yesterday was a really long day. Max was scheduled for his heart cath at 10:30AM. We arrived at the hospital at 9AM and for various reasons (long first case and Dr. Perry being called into an emergency), the team did not take Max back into the cath lab until 1PM. Considering he had his last bottle at 5:30AM, waiting in pre op for four hours was fun! I've never seen Max suck so hard on a pacifier. Max doesn't even like pacifiers but he sucked so hard on that stupid thing hoping that if he sucked hard enough maybe some milk would come out! As of Wednesday, the plan was to get some data from the cath and then perform an atrial septostomy again to increase Max's red and blue blood mixing. Right before the procedure Dr. Hanley (Max's surgeon) advised the cath team not to proceed with the septostomy. Brad and I quickly inferred that if they were not doing the septostomy that his surgery was imminent. We received a call about an hour and a half later that Max's cath was successful and they had gathered all the data they needed. The cath data confirmed that Max had grown into the pulmonary band and that because he is now such a chubster that the band is now too tight. The tight band decreases blood flow to Max's lungs which results in lower oxygen levels. Dr. Hanley and Dr. Perry discussed the results and the decision was made that with the great pictures from the ECHO and the data from the cath lab, Max did not need the MRI. Max was successfully extubated in the cath lab and was transferred to the NICU. Brad and I love the NICU. We know there are really sick kids in the NICU but the vibe is so different than the CVICU. The nurses are amazing, nurturing, and loving. Max is so lucky to have them. We got to catch up with some of our favorite nurses (we missed you Krista) and show them all how cute and chubby our Mighty Max has gotten.

We love Roberta!

During rounds this morning we were informed by Dr. Sachs (Max's main cardiology intensivist at Stanford) that Max is scheduled for his full biventricular repair on Thursday August 4th. Because of Max's low oxygen levels and need for home oxygen, Dr. Hanley bumped another patient and put Max in his surgical schedule for next week. Brad and I have mixed emotions. We are excited that we made it to this point and that god willing this will be Max's last surgery. We are also scared to death of what is to come. This should be 8-9 hour open heart surgery and we already know how terrifying the recovery is from heart surgery. The CVICU is such a scary place and our anxiety runs high whenever we walk in that place. We know Max will receive amazing care there from the doctors and nurses but it is just heartbreaking to see your baby in that place. We have no idea how long his recovery will be but we hope to be home by the end of August/beginning of September.

Sleepy baby 

Max's recovery from the cath went really smoothly and he was discharged today! Our plan is to stay close to the hospital over the next few days. We hope to lay low and keep Max healthy until the big day on Thursday. Please keep Max in your prayers. Please pray that Max's repair is successful. Please pray that Max's recovery goes as smoothly as possible. Please pray that Brad and I have the strength to get through the ups and downs of the next few weeks. Max is truly our little warrior and we look forward to the day when his broken heart is fixed!

And we are out of LPCH at least for a few days!

Back to Stanford

Unfortunately we are headed back up to Stanford a little sooner than expected. This last Tuesday I took Max to his two month wellness check with his new pediatrician, and when the doctor measured his oxygen saturations they were in the 60s. The low oxygen levels were not totally unexpected as Max's saturations seemed to be dropping little by little every cardiology visit. I immediately called Dr. Doshi (Max's cardiologist) and she then contacted Stanford. We wanted Stanford to know exactly what was going on before their big heart conference every Wednesday morning. At this weekly conference surgeons, cardiology intensivists, and pediatric cardiologists present different patients and then make surgical plans as a team. After discussing Max, the joint  decision was made for us to head back up to Stanford this week to get more information.  On Thursday, Max is scheduled for a sedated MRI in order to obtain a 3-D image of his heart and specifically his VSD (hole in his heart with the strange attachments of the mitral valve). From the MRI his anesthesiology team will take him straight to the cath lab where they will collect as much data as possible about what is going on with Max's heart. They suspect that Max is probably just streaming blue blood out his aorta but the cath will tell them for sure. Depending on what information is collected during the cath, the doctors may perform another balloon procedure to reopen his ASD to produce more mixing of his red and blue blood. We are hoping to just be in the hospital a few days but we have learned from previous experience that we could be there awhile. If the cath improves Max's oxygen levels they will probably send us home to let him grow some more. If the cath doesn't improve Max's oxygen saturations, then it all depends on how the VSD looks in 3-D.  Dr. Hanley may decide to go ahead and do his full repair even though Max isn't as big as he originally wanted or he may decide to keep Max close by at the Ronald McDonald house on home oxygen and just let him grow until he feels it is safe to do Max's full repair.

We currently have Max on home oxygen 24 hours per day. It has been really stressful to play nurse: measuring his levels and adjusting his flow accordingly, but we are slowly getting used to it. Although we are completely home bound, the good news is that Max seems to have a lot more energy since starting the oxygen. We have gotten more smiles and coos in the last three days on oxygen than the whole previous week combined.

There is never a dull moment in our house these days. Between the monitors and the joys of three kids it can be overwhelming. But we know all too soon that our family will be split up again so we are just trying to embrace the craziness. Please keep mighty max in your  prayers. Please pray that we arrive at LPCH safely. Please pray that the procedures are performed without complication and that doctors get the answers they are looking for. I will keep the updates coming and will try to update everyone late Thursday/Friday with more information.

Love my big brother and sister

happy baby

Showing everyone how strong I am

Second Opinion

We have finally heard back from the surgeons at Boston Children's regarding Max's surgical plan. Yesterday Dr. Doshi (our cardiologist from CHOC) called me and spoke to me for almost an hour trying to explain everything and to make a plan. Ever since Stanford started mentioning a shunt surgical procedure I have been on a mission to find another option. If Max's oxygen saturations drop too low before he is big enough for Dr. Hanley at Stanford to do his full repair, there was talk of performing a shunt procedure which in my eyes would permanently damage a perfectly good blood vessel and would greatly reduce Max's long term survival chances. There was also talk of possibly doing another PA band surgery to loosen the band as he grows which in our minds is another surgery that isn't accomplishing much. The good news is we have a plan B from Boston if it comes to down to that. Dr Emani from Boston said when Max's oxygen levels drop too low that they would perform his complete repair in two stages. They would first perform the arterial switch portion of his surgery (switching the position of the aorta and the pulmonary artery),regardless of his size and that would buy them some more time. Then they would wait as long as Max's heart will let them before they try to close his very large and complicated VSD (Ventricular Septal Defect). Unlike Dr. Hanley, Dr. Emani doesn't believe the mitral valve will be compromised during the surgery but he does want Max to be bigger to have as much room as possibly to work internal to his heart to repair the giant hole.

After a long discussion with Dr. Doshi our plan going forward is to keep monitoring Max's oxygen levels on a biweekly basis. As soon as Max's saturations drop (Dr. Doshi thinks some time in the next two to three months) he will be admitted to CHOC for a cath procedure where they will reopen his ASD with a stent. During this hospitalization they will also do an MRI of Max's heart. Both surgical teams (Boston and Stanford) want to see an MRI so they can have a better idea what Max's VSD looks like in three dimension. After the MRI and knowing how big Max is at that time, both surgical teams should be able to give us a more definitive surgical plan.

Boston is an amazing place and ranked number one in the country for cardiology, but taking Max on a six hour cross country flight has its own risk. More than likely if we end up going to Boston he will need be life flighted on a medical flight so his oxygen levels can be monitored more closely. At this point in time there a lot of unknowns. How long until Max's oxygen saturations drop? How much extra time the cath procedure will give us? What information the MRI will give the surgeons? Which surgical center is best for Max? How many and which surgeries he will he need? 

Dr. Doshi will help us facilitate and determine what is best for Max long term. We are very lucky to have a doctor who takes the time to consult with these surgeons, takes the time to explain things to us, and happily puts politics aside and just wants what is best for our kid! 

Yay for baby rolls

Many of you have been checking in and wanting Max updates. I guess sometimes no news is good news. In the hospital things would change hour to hour and now we are just enjoying our "boring and quiet" life at home.

Max has been doing really well. The little guy has been taking bottles like a champ and there has been absolutely no need for an NG feeding tube. I have been fortifying his milk to 28 calories. Breast milk is 20 calories per ounce so I add an extra 8 calories of formula to increase his caloric intake because his heart has to work so hard. The good news is our little guy is actually starting to get a double chin and some yummy baby rolls! Last doctors appointment he was up to 10lbs 11oz. For a heart baby this is a great weight gain. We are hoping he stays on this trajectory because the faster he gets to 22 lbs the better!

Our happy and chubby baby boy!

We have been seeing Dr. Doshi at CHOC on a weekly basis and now biweekly. Things have been relatively stable in terms of Max's heart. Each visit he gets an ECHO, EKG, pulse ox, etc. The last couple of visits Max's oxygen saturations have been in the 70's. Most people have oxygen saturations of 100, most kids like Max are in the 80's (hearts kids that mix red and blue blood). From what doctors have told us it is ok for Max to hang out in the 70s but not any lower. The way Dr. Sacks from Stanford explained it to me is that although Max has hypoxia (low oxygen levels), he will not become hypoxic (tissue damage from low oxygen levels) unless he drops into the 60's. Dr. Doshi thinks part of the cause of the lower sats in the last few weeks is the ASD (Atrial Septal Defect) that was created during the cath procedure at LPCH is starting to close. One option we have if the sats drop dangerously low is another catheterization procedure to open the ASD with a stent, but hopefully this time it will be performed at CHOC. Our short term goal is to keep Max stable with adequate oxygen saturations over the next year until he is big enough for his full repair. We are still waiting to hear back from the cardiothoracic surgeons at Boston Childrens (Harvard). I would like to have a surgical plan B if we get into a situation with low oxygen sats (even after interventions) before he reaches Dr. Hanley's magical 22 lbs. 

Although each cardiology appointment is filled with a lot of anxiety, our day to day life is really normal... or as normal as life can be with three kids! Next week Brad heads back to work and I will really be on zone defense (three kids on one adult). Max seems to be a totally normal 7 week old. He is still waking up twice in the middle of the night to eat. He loves to be held and rocked to sleep. He smiles and giggles when his brother and sister pay any attention to him. 

Big brother and sister - the best medicine!

Last week Max had his evaluation from the regional center. At this point in time Max has not showed any signs of delays. The plan is for Max to receive in home early intervention therapies before he gets a chance to become delayed. Many heart kids like Max end up behind with gross motor activities because their little hearts just get tired. I tell Brad all the time that "my full time job" over the next year is to leave no stone unturned when it comes to Max's health. And don't worry when I'm not fighting for Max, I will still be checking eyeballs!

Thank you to everyone who has reached out to our family, sent gifts and cards, brought over meals, and sent restaurant gift cards so I don't have to cook (shout out to my MOPS moms!). Please continue to keep mighty max in your prayers.

Sincerely,

Kara and Brad (two very tired parents)

Home

Sorry it has taken me so long to post an update. Life has been crazy adjusting to our new normal and unpacking after being gone for 7 weeks...

Finally leaving the hospital

On Monday morning we got word from the attending in the step down unit that we would be discharged later that day. Max had been doing really well and had been taking enough milk by bottle that they were able to remove the NG tube. After a few extra tests and lots of paperwork we were finally discharged at the height of rush hour. Max wasn't very happy with the traffic and the first hour and a half of the drive was pretty rough. We decided to drive half way to San Luis Obispo and spend the night in a hotel. Then on Tuesday we made the final trek to Walnut Drive. Molly was anxiously waiting outside with my mom. She was so excited to see us and to finally see her brother outside the hospital. The last time she had seen him he was pretty sick and intubated so this was a nice change. She has already been the best big sister and a super helper to her mommy (very different than when Luke was born and she wasn't too happy to be sharing her mom).  Molly loves to hold him and to give him lots of germ filled kisses. Luke was napping when we got home and so he was super surprised to see us when he woke up. He had been talking about feeding his brother a bottle everyday before we got home so he helped for about 2 seconds and then went off to play Batman!

Max has been much happier at home. No more fluorescent lights, monitors beeping, kids crying, and people messing with him. He is sleeping better and crying less. We still give him Tylenol twice a day to help with incision discomfort.

On Thursday we headed up to CHOC for Max's first cardiology appointment. He had an ECHO, EKG, oxygen check and weight check. Things seems to be pretty stable. Dr. Doshi has her work cut out for her to keep Max's saturations up over the next year. As Max gets bigger his PA band will get tighter and his oxygen saturations will decrease. Dr Hanley (Max's surgeon) wants him to be 10kg or 22 lbs for his next surgery. Right now we are trying to figure how many extra calories Max needs in order to start gaining weight. Right now he is 8 lbs 6 oz (birth weight was 8lbs 11oz). Brad and I have never had a skinny baby so this is new territory for us. We also took Max to his first pediatrician appointment. Luke said to me before I took him "Are you going to the hospital? Please don't go back to the hospital." I guess that is his way of saying that he likes having his family back together!

And I have to give a shout out to my other half on Fathers Day weekend because he has truly been an amazing partner and daddy over the last month. Happy Father's Day to our Daddy Braddy!!

One step closer

Yesterday afternoon a bed finally opened in the step down unit so we packed Max up in a new crib and wheeled out of the CVICU. I sincerely thanked Dr. Asija and team for taking care of Max and being pivotal in his turn around last week. Each week a new attending takes over and I believe Dr. Asija was determined to get Max on the right cardiac path in the least invasive manners possible. She was the one who pushed for the atrial Septostomy in the cath lab when other doctors thought it wouldn't work.  We are thankful that these really smart people choose to work in such a stressful environment. The CVICU at Stanford is a beast and their job is to keep really sick kids alive. We hope to not be back in that place until Max's arterial switch surgery next year.

I finally get to wear clothes!

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The third floor cardiac unit is a completely different world. We have a nurse but as parents we are expected to take care of Mighty Max. Brad and I give Max bottles of fortified milk (extra calorie breast milk), change his diapers, administer his meds, and take care of his NG tube. Whatever milk that Max doesn't take by bottle is put into his NG tube in his nose to ensure he gets full feedings without getting too tired. The good news is that Max for the most part has been doing a great job of taking bottles. We hope to take him home without the NG tube but we are totally ok if we need to, if that means we can go home sooner. Cardiac kids in general burn a lot of calories because their hearts have to work so much harder that they have trouble gaining weight. Many kids and babies we have met here have either NG tubes or the more permanent G tube. Once Max has his full repair in a year or so his heart should work much more efficiently and hopefully won't need any extra help with feeding.


Cardiac and pulmonary wise Max has been very stable. At times he has still been a little fussy (so much for being the chill third child!). We have been giving him Tylenol as needed but they don't think he is suffering from withdrawals because he doesn't show any other symptoms. The only thing keeping us here now is that Max just has to prove that he can gain weight. He gained 100 grams in the last 24 hours so we are on the right path. Hopefully sometime this week we finally will get to go home!

The goals was to make it home by Luke's third birthday tomorrow (June 13th). Obviously that isn't going to happen so we will celebrate when we finally get home. It's been a LONG 23 days in the hospital and we are ready to see our kids and Walnut Dr. again!

Withdrawal

This mama is pretty tired tonight but I know many of you are waiting for an update. Things are still going really well for mighty Max. He was supposed to be moved to the step down cardiac unit today but there are no open beds so he is still in the ICU. Yesterday we were dealing with a collapsed upper right lung and lots of junk in his lungs. Today Max's lungs are much better and they have been weaning him off oxygen. Hopefully after tonight they will have him totally off any support. OT and PT stopped by to see Max today and began oral therapy to get him to take a bottle. We are up to 40 cc a feeding and once he can sustain 60cc per feeding we can ditch the NG feeding tube. The only bad news to report is that Max has been pretty fussy all day. His nurse today nick named him "Mad Max" because he was at times inconsolable. The team thinks he is suffering from withdrawals so they started giving him small doses of Ativan and will begin a taper. Brad and I spent pretty much the whole day holding, rocking, and talking to him. After so many days of not being able to love on him and not being able to hear him cry it is a nice change of pace to see him act like a newborn even if he is an extra cranky newborn.

I'm still pretty cute even when I'm crying..

Please say an extra  prayer for all the kids in the CVICU. It is one scary place. Brad and I have now seen two kids code (heart stop) and have seen surgical teams crack open chests at the bed side because the kids aren't stable enough to get to the OR. Please give the healthy little ones in your life a little extra snuggle. We are happy to have our little guy on the road to recovery but have met so many wonderful heart families that won't be heading home anytime soon. And tonight we count our blessings.

And the forward momentum continues

Nothing but good news to report from Palo Alto. After six days straight of bad news we are finally on a positive trajectory.

After rounds this morning, Max was downgraded from a CPAP to a nasal canula (less oxygen and breathing assistance). With each change Max's CVICU team makes, our little fighter continues to have good numbers and good oxygen saturations. He is a much happier baby to finally have the tube out of his throat and all that other crap off of his face. And his mom and dad are so happy to see his cute little face and eyes again! He is off all of his medications except for his diuretic (Lasix) and an occasional dose of morphine (which will be discontinued now that his chest tube is out). They have steadily been increasing his breast milk feeds through his NG tube (feeding tube in his nose). This afternoon his nurse practioner removed his RA line out of his heart and his chest tube that was draining excess fluid. The good news is once he is stable from the RA line removal we can hold him. It has been a long 8 days and I can't wait to snuggle that little boy again!

Now the next step is feeding from a bottle and to start gaining some weight. Our little guy has had very little in his tummy over the last 8 days and has lost well over a pound. We are hoping he follows in his brother and sisters footsteps and becomes a super chubby baby.

Thanks for your messages and prayers. In the really dark days it was one of the few things that kept Brad and I sane. The CVICU is a scary place but we are thankful for everyone that is brave enough to work there. We are hoping and praying that things keep moving in a positive direction and that in the next few days that Max will either be transferred to a step down cardiac unit or transferred back to the NICU. Onward and upward! MAXIMUS MAXIMUS MAXIMUS!!!

Happy tears

Today for the first time since Max was born I cried happy tears. After crying multiple times a day when everything was going wrong it was a nice change to cry when something finally was going right.

Yesterday around 3PM Max was wheeled into the Catheterization lab. The plan was to  directly measure blood flow and pressure differentials in different places of his heart. The doctors needed to know exactly why Max's oxygen saturations were so  low (high 60s-70s). The good news is they discovered the PA band was not the problem. The bad news is they discovered the problem had to do with Max's anatomy of his great vessels. Basically the PA band directed excessive blood flow away from the lungs which is a good thing but it also caused the blue blood (deoxygenated blood) to preferentially go out the aorta. The cath Cardiologist, Dr. Peng, our attending in the CVICU, Dr. Ritu Asija, and Max's surgeon, Dr. Frank Hanley, all discussed the options and made a last ditch effort to try and open up Max's atrial septal defect. The hope was that by making the opening bigger among the top two chambers of the heart that this would allow for more red and blue blood to mix so that blood going out the aorta would become more red or oxygen saturated. Max was gone in the cath lab for almost four hours. When Dr. Peng came out of the procedure she stated to us that everything went smoothly but the ASD balloon procedure did not seem to help his oxygen saturations. 

Brad and I made a conscious  decision to stay positive as the alternatives if this didn't work were bleak. I prayed and went to bed anxious but optimistic. When we walked into the CVICU this morning we ran into  one of my favorite doctors here, Dr. Loren Sacks. Dr. Sacks had been with Max for the entire night shift  and informed Brad and I that Max's oxygen levels were significantly higher and it seemed to him that the ASD procedure is what he needed. Both Brad and I broke down in happy tears. This was the  first time in the CVICU that we have received positive news about Max. 

The team made the decision to extubate little Max (remove his breathing tube) around 2:30PM today. They made some significant changes from the last time this was attempted. They gave him Ativan and Dex (not sure what this is short for) to keep him calm and steroid treatments to help with upper airway restriction. We were also blessed with a very attentive nurse and attentive fellow that were determined to get him through this time.  Three hours later he is still doing great. And his oxygen saturations actually went higher after extubation (low 90s). Max is currently at 50% oxygen on the CPAP and they are continually weaning him. The hope is to have him on room air (no oxygen) sometime soon. 

Although Max is still in the CVICU we hope that he is now one step closer to coming home. Praise God!

Birthday blessings

Saturday was my 34th birthday and my original wish for my birthday was to get to hold Max again. Unfortunately that wish didn't come true but I did get to spend time with all three of my kids which came in a close second. My mom bravely flew up with Molly and Luke for the weekend after we were informed that we would not be heading home with Max anytime soon. This weekend has been such a blessing and a much needed distraction. It was wonderful to step outside the walls of the hospital and to just be mom and dad for awhile. Molly seemed to have missed us a lot and has been showering us with lots of snuggles and kisses. Luke on the other hand seems to have had the opposite reaction and wants nothing to do with us after leaving  him for the last two weeks. As hard it is on the whole family I know someday he will understand and realize why mom and dad disappeared for awhile.


As for Max things have been up and down. He has good hours and bad hours. The doctors just can't seem to figure out Max's heart and oxygen saturation levels. The plan is to go into the catheterization lab on either Monday or Tuesday so they can directly measure blood flow and pressure differentials in different parts of his heart. Although this is not a major surgery it still has risks and we hope that this procedure will give the doctors the answers they have been looking for. There has also been talk of doing a balloon procedure during the catheterization pocedure to create a larger atrial septum defect (ASD or hole between the top two chambers of the heart). The doctors hope that a larger ASD will allow for more blue (deoxygenated)  and red (oxygenated) blood to mix so that more oxygenated blood perfuses to the rest of his body.

We hope and pray that the cath procedure gives the doctors answers and allows Max to move forward with his recovery. Once he is stabilized then they can try to extubate again. We will probably be in the hospital at least another week if not longer. I'm not going to lie that sometimes I just want to pick Max up and run out of here.

I have also contacted Dr. Emani (cardio thoracic surgeon) at Boston Children's for his opinion on Max's long term surgical plan. At this point in time we have to get Max stable here at Stanford but Brad and I want to make sure multiple surgeons are on the same page about what is best for Max. Monday we will begin the process of getting the teams at Boston all of the relevant studies of Max's heart.

Please keep mighty Max in your prayers. We hope to have more answers and a better plan to get Max out of here over the next couple of days. We are hanging in there... Some days just barely... But we are trying to keep focused on being Max's advocates and getting him healthy and home!

And the roller coaster continues...

I don't even know what to say other than today has been an emotionally draining day. We started our day today in a good place. All day yesterday and into this morning Max's numbers (Heart Rate, Blood Pressure, and Oxygen Saturation) had all stabilized. The cardiology team decided he was ready to be extubated so they slowly began weaning him off sedation (Fentanyl) and the ventilator. The team extubated Max around 11:30 and everything was going well. His oxygen levels actually increased and we thought he was in a good place. Around 2:30 I was visiting with Max when suddenly he became very agitated, began crying out in pain, arching his back, and had difficulty breathing. Watching him in so much pain and discomfort was heartbreaking as his mom. Max proceeded to D-sat several times (oxygen levels dropping dangerously low). I couldn't handle it and left the ICU a blubbering mess. Thankfully I have met some more seasoned heart moms during our stay and today they were a lifesaver. They were there to talk me through things and let me know that they have all been there and things do get better. Shortly after the cardiology team decided to reintubate Max, gave him a muscle relaxer, and gave him a good dose of Fentanyl. The good news is Max is much more comfortable now, but the bad news is we are back to square one. They are currently trying to figure out Max's airway issues (swelling, excess mucus) along with his desaturation issues and will leave him intubated until they figure everything out.

Not only have we had the excitement of Max's extubation and subsequent reintubation we were also told this morning that there is a possibility of doing another surgery called a shunt procedure to help increase Max's oxygen saturation levels. There are still lots of questions... is the Pulmonary band too tight, is there a problem with Max's lungs that is causing reduced oxygen levels, or is the blue/desaturated blood streaming to his aorta because of the unique anatomy of his great vessels. At this point we have more questions than answers and we just have to wait and see where Max's oxygen saturations end up once he is extubated and on room air.

For the first time since we have been at Stanford Brad and I have lost some faith in our team up here. I know they know what they are doing but things just seem to be all over the place. We have expressed our concerns about just doing another surgery or two to try and figure things out. I have reached out to Boston Childrens to get a second opinion about Max's surgical plan. The last thing Brad and I want is to put Max through more surgeries than he needs. We know Dr. Hanley is a great surgeon but we need to make sure he is the right surgeon for Max.

I have decided to take a little reprieve from the hospital tonight and try to regain my composure. It's been a hard few days but the silver lining is Luke and Molly are headed up here to visit tomorrow. It's been two weeks since we have last seen them and it will be a nice distraction to just be Mommy and Daddy for a few days.

Please keep praying for Max. Please pray that he stabilizes and is extubated more smoothly sometime soon and that the doctors are able to find some answers. Thanks for all of the kind words and prayers it really does help!

Rough Day

I wish I had better news to report this morning but little Max is struggling. Brad and I arrived at the hospital yesterday morning expecting to see Max a little more awake and a little better off then right after his surgery. Instead we were informed that he had a rough night. Over night on Tuesday Max's right lung partially collapsed and his pulmonary edema worsened. As a result of these two things his blood gas oxygen levels (the oxygen levels in his body) were very low. They began aggressively treating his lung problems with a respiratory therapist. They were able to get his right lung inflated again and they temporarily got his oxygen levels up. Unfortunately throughout the day they continued to drop. The doctors have been trying many different approaches to get his oxygen levels back up: they give little Max a blood transfusion to give him more red blood cells to increase his oxygen carrying capacity, they bumped up his oxygen levels on his ventilator (he's still 100% reliant on his ventilator), they increased his diuretic to get more fluid out of his lungs, they gave him a vasodilator to dilate the blood vessels in his lungs, they put him on a nitrous machine (not quite sure what that is), and they continued aggressive breathing treatments with the respiratory therapist.

If all of these attempts fail to increase his oxygen levels then there is a possibility that the surgeon put the pulmonary band on too tight (reducing his oxygen levels) and that he will have to go back into surgery. Brad and I are scared and really need Max to turn a corner today. Please keep little Max in your prayers and I hope and pray that I can give more positive updates later today...

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