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!

I

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.